Omg pain!!!

[NikkiNicole]

It's all I can think about. I can't get comfortable no matter where I am ... chair, my amazing Tempurpedic Cloud Supreme, one pillow, two, stack them up to make me elevated, sitting on the couch. Standing, sitting. It doesn't matter. I can feel my shoulders, my hips, my knees, my ankles, the joints of my toes, my wrists, the left thumb, my neck, elbows ... It's almost as if I can picture every joint in my body and it's red and angry.
My face hurts and I keep getting hot flashes. Doc says she wants to talk to me on the phone but I have no idea when that will be. Obviously not today ... maybe tomorrow (Wednesday)??
I have taken an 800mg Ibuprofen. Nothing. Not even the slightest teeny bit of relief. Now, I'm getting a headache. I want to cry so damn bad. I can't think of anything else. I was going to write today but I can't wrap my mind around my characters, or the English language. I can't type correctly, words fail me.
I'm staying home from work tomorrow if I feel like this. Although, I don't know what good that will do since I can't get comfortable ANYWHERE. I wish I had a hot tub, or even a bathtub that was big enough to be in. I need to soak in a giant vat of warm water with lavender or something.
I tossed and turned all night last night. There was NO possible way to get comfortable. I couldn't lay on either side because of either shoulder or hip. I laid on my back and then that hurt everything.
Thankfully, it's not very busy at work. I don't have to concentrate too hard.
I have no words. I'm miserable. :crying::crying::crying::crying::crying:

[Birdie]

I want to cry so damn bad. I can't think of anything else.

Don't cry, I'll do it for you. Others also I'm sure.

[Kvincent13]

Keep your head up, I'm going through the exact same thing. Some days (most) are worse than others, but it's the snotty days that make me appreciate the good ones .... (Sorry if that sounded like a motivational poster )

[NikkiNicole]

No apologies for being a Motivational Poster! It's a tremendous comfort to know that I am not alone. The people around me at work right now, they don't understand. They just don't get it. It's like I am crazy or making it up. If they only knew how badly I want to burst into tears. But, you're very right. It's days like these that make me realize when things are good ... they are really quite awesome.
I'd take even half awesome right about now. Or just to not feel pain ... to just have five minutes of "ahhhhh"

[Alysia]

Isnt all these enough severe to get a serious treatment ? Please Nikki, can you go and demand a decent treatment ? Demand it from your doc. Asap. Ok ?

[mishb]

You need to be back on pred for starters.
I remember these pains well. Actually I don't remember them being like that, I have blocked them from my memory,
until you mention them and then I am crying with you :crying:

These pains are not to be messed with. This weggie dog has well and truly woken up.

Nikki my love, please go an get some help. You deserve to feel better just as much as the next person.

[JeanMarie]

I'm with Alysia and the others, pain has a meaning & pain that bad needs the attention of your doctor.

[Debbie C]

Nikki call your dr or go to the er. You need to be on something,even if it is just pred for now.Or maybe at the er they can give you something to relax you and help with the pain. Please go,don't wait until you get worse:hug2:

[annekat]

I agree that pred would likely help, and if you have any sitting around, just take it! I'd suggest 30mg. at least, if the pain is that bad, though you know yourself and pred better than I do and probably know what amount would help... Just to get you through the time until you can see your doc or go to the ER! Hopefully your doc will get you a prescription over the phone. Beyond that, you need to get to the bottom of why these things keep happening! The care of a real specialist would sure help.

[NikkiNicole]

I don't remember if I updated this thread or not. I emailed my rheumy almost begging for pain meds. I can't sleep at night and it's really started to affect me. She wrote back that, if it's fibromyalgia, I can't take narcotics so ... she's going to wait. Unfortunately, she said if its not fibro ... then I need to ask my GP for narcotic medication.
My GP who is on maternity leave.
I've been seeing either a DO or an NP whenever I go to the regular doctor and they always look at me like I've made up some condition on a whim ... they don't know what it is. I already get treated like I am seeking pain meds when I go to the ER ... and now I am supposed to ask these people who know nothing about me for pain meds? And that is only if she cannot make the fibro diagnosis. We are going to have a phone appointment but when I called her office the soonest apt was the 8th.
My desperation is growing by the moment.

[Birdie]

My GP who is on maternity leave.

You're no dummy, you can find a different doctor or use an urgent care facility. It might take hours calling doctors offices. Do it or go to the ER and get demanding.


My desperation is growing by the moment.

There is no excuse for it. Have you been to a doctor in the last several weeks?

PM me your address and I will find an urgent care facility near you, or you get a family member to find it, ask a neighbor for help. There is one unless you're in a small town. They go out of their way to make themselves available and easy to find. This is what they do. They help people who need help.

If you're out of food do you hesitate to go to the grocery store? Nope. That's because that's what they do, provide groceries to people who need them. Car broke? Auto shop. Pain and suffering? Doctor.

Doctors, hospitals, urgent care, they all need you, if you don't support them they'll be out of a job. Who's gonna feed their families? DO IT NOW. You've been this way for a long time.

Some of what you post makes all of us worry that you might be suffering more than pain and discomfort, which on it's own is more than enough to need medical attention. There might be internal damage taking place from the things you tell us. If that weren't true we wouldn't keep telling you to go to the ER.

[MikeG-2012]

I don't remember if I updated this thread or not. I emailed my rheumy almost begging for pain meds. I can't sleep at night and it's really started to affect me. She wrote back that, if it's fibromyalgia, I can't take narcotics so ... she's going to wait. Unfortunately, she said if its not fibro ... then I need to ask my GP for narcotic medication.
My GP who is on maternity leave.

It is time to do something drastic, because drastic times call for drastic measures, right?

It is finally time to TAKE CARE OF YOURSELF AND FIND A NEW HEALTHCARE TEAM!!!

Not tomorrow, not next week, NOW!

Any doc that passes off symptoms from a WEGENERS PATIENTand passes it off to another is a hack, and should be left like you'd leave the old magazine in your waiting room.

FIND A VASCULITIS CENTER, call someone that can get you there and GO to the ER at that facility and tell them that you are in a flare up and that your regular docs won't do anything for you.

There are great docs out there, and it sounds like yours are not those people!!!!

I'm going to stop screaming at my monitor and also stop ranting now, and you won't hear it from me like this again. We all want you to be well Nikki!

You need to take charge of your health, because no one else will do it for you!

[annekat]

Hey, that makes me wonder, what if you just took a trip to San Francisco and went to the ER there at the UCSF hospital where specialist Dr. Chung is located? They'd have to treat you, and might even admit you. Then Dr. Chung might get involved in your care very quickly! Of course I'm sort of fantasizing, because I don't know if your current HMO, Kaiser, would pay for this. I just think it is crappy that you are limited to this one HMO that is not giving you the care you deserve. As for docs passing you off on each other, I've been there, and it sucks. But any doc can prescribe anything, and if one of them is on vacation, you should be able to badger the other one into prescribing you what you need! Where's that badger picture that Mike or someone posted not long ago?

[Jaha]

Nikki,
When you go to the ER you are seeking treatment whether it is for Fibro or for a Wegs flare. They would probably do so labs and such, maybe so scans, but they would be looking for the reason for all the pain. It has been my experience whether they find something or not they will do as many tests as they can. If it is a flare, your Sed rate will be elevated and your chest x-ray may not look so hot. If that is so then it is a flair, which you need probably IV Preds and also pain management and hooked up with a good specialist. If it is fibro, then you need pain management and possibly anti-inflammation drugs. So it is a win, win situation, if you would just go. I forgot to say also, wear a mask so you don't contract anything worse in the ER, it also gets their attention to your immune suppressed disease.

[Birdie]

Where's that badger picture that Mike or someone posted not long ago?

Badger picture?
Do you mean this one?

2218

Could substitute any of our avatars, we've all been badgers. Go already Nikki. A bunch of people here are wishing you would get help. I can't figure out why you haven't done it. Oh, BTW... I won't accept any excuses I've already heard. And, uhm, I can't think of any valid excuses.

[annekat]

Badger picture?
Do you mean this one?

2218

Could substitute any of our avatars, we've all been badgers. Go already Nikki. A bunch of people here are wishing you would get help. I can't figure out why you haven't done it. Oh, BTW... I won't accept any excuses I've already heard. And, uhm, I can't think of any valid excuses. Yes, I think that pic works just fine, Gary. How could anyone say no to a face like that?

[Birdie]

Yes, I think that pic works just fine, Gary. How could anyone say no to a face like that?

The face is Andy, he's only 15 years old but smart enough to agree with us on this issue.

Here's his personal web page:

http://www.garyrin.com/birds/andy/Andy.html

[annekat]

The face is Andy, he's only 15 years old but smart enough to agree with us on this issue.

Here's his personal web page:

Andy Bird Main Page (http://www.garyrin.com/birds/andy/Andy.html) Enjoyed the bird pages. Added this to my "fun stuff" file on the old Mac.

[drz]

When I was new into my treatment but doing well enough to finally be out of ICU and doing rehab in a nursing home closer to home I often went to their ER down the hall. The doctors there readily admitted they had no experience in treating Wegs but they listen to my concerns, did the tests I suggested, addressed my concerns and followed the recommendations of my treating doctor who ordered my labs regularly and prescribed my meds for Wegs according to the labs and how I felt from my self report and the nurses notes. The local docs gave me regular transfusions, IV antibiotics, oral antibiotics and other treatment which they ordered in consultation with me and my treating doctor two hundred miles away. I later had similar experiences in other ER rooms and walk in clinics with many doctors who admitted to having little experience with treating Wegs, but were willing to do the best for me they could.

The worst were the arrogant ones who knew nothing about treating Wegs but thought they did not need too to help me. I learned to ignore their advice and seek help from someone who was more responsive to my needs. My assigned doctor in the nursing home from the community was no help at all so I had to work around him. One time he discounted my symptoms and concerns so the next day I went to an ENT doctor I knew in another town near by who reported my symptoms and concerns to my treating doctor and i was enroute the next morning by ambulance to his hospital 200 miles away. I was having trouble swallowing and my throat felt swollen inside but it turned out to be GERD flare caused by reduction in my Protonix by mistake up and not Wegs.

One time one ER doctor blew me off, maybe late for some appointment elsewhere or something, so i complained to the nurses when I got back to my ward and he must have got some feed back about it cause he seemed to try be really nice the next time i had to see him.

Not all doctors are helpful every time you see them. Some are great most of the time, some seem very bad and dangerous to your health most of the time, so you need to persist and shop around till you find ones you feel comfortable trusting with your health care. You don't need to agree with or accept recommendations that feel wrong to you cause doctors often make mistakes and it is your body and your health. Not theirs! you have to take responsibility for your health cause you will be the one living with the results.

[Birdie]

The doctors there readily admitted they had no experience in treating Wegs

I had several ER doctors who were honest enough to say they had never heard of Wegeners.

[Alysia]

dont ever take narcotics. it killed my beautiful Phil

[Jayne 14]

Honey you need to call your doctor , pain like this is intolerable & you need something to help get it under control

[Debbie C]

Nikki,whats going on with you ?

[NikkiNicole]

I have an apt with my rheumy on the 8th to discuss the big F word and the medications I will need to take if that is what this is. She is definitely leaning towards it because of all the symptoms and ... I have to pick up my prednisone when it is available at the pharmacy. Yes, I have to go BACK on prednisone.
I sort of don't care. I just want to feel nothing. I don't want pain anymore.

[Pete]

Yeah, Pred is the drug we love to hate, but it beats toughing it out with no relief...

[Alysia]

Once on pred you will start getting better.
Ask about rtx. It was the only one that worked for me.
What is big F word ?

[NikkiNicole]

The F word, Fibromyalgia.
I'll be picking up the prednisone tomorrow. I just got the notification that the prescription is ready so now I can go and get it. Hopefully, that will mean relief.
I have already decided that I am going to stay home from work tomorrow. The pains in my shoulders are getting a lot worse and I am chugging through my shift right now ... At least I can start the pred tomorrow and hopefully be back and ready to rock work Wednesday morning.

[Debbie C]

Its about time you took some time off to take care of yourself...you should take a few days off. Hope the pred gives you some relieve. Good luck with the dr,let us know

[Birdie]

[QUOTE=NikkiNicole;100513]I'll be picking up the prednisone tomorrow.QUOTE]

Soooo cooool Nikki. Let us know when we can stop worrying about you, when you're doing better.

Pain sucks.

[mishb]

The F word, Fibromyalgia.
I'll be picking up the prednisone tomorrow. I just got the notification that the prescription is ready so now I can go and get it. Hopefully, that will mean relief.
I have already decided that I am going to stay home from work tomorrow. The pains in my shoulders are getting a lot worse and I am chugging through my shift right now ... At least I can start the pred tomorrow and hopefully be back and ready to rock work Wednesday morning.

I thought the big F word was F#### (Flare) :crying:

Hopefully the pred kicks it back under control quickly.
I too, am s glad you are taking a day off work.

[NikkiNicole]

I stayed home yesterday and picked up my prednisone. I was OK yesterday, had a lot of tension and pain in my shoulders and neck and kept finding myself sitting in ways that would aggravate it. I would try to consciously be as limp as possible and not engage any of my joints. It sucked.
I'm back at work today, took the prednisone yesterday (20 mg for 5 days and then taper) and today I have serious aching from my ankles and knees. I've been struggling to eat clean for awhile. There's been so much extra stress on me the last couple weeks I kept giving in to my cravings.
Well, no more ... I have a feeling my weight is only aggravating the ankles that already hurt. So ... enough is enough. I'm on prednisone again and have no idea if I am going to have to be on it for awhile and I want to feel as good as I did when I was eating clean.
I stopped being a trainer at work because it was the part of my job I hated, and it was a HUGE added stress to an already stressful job so ... that's off my shoulders. I am still adjusting to that. I feel a bit like I left my training team short handed but ... that's my supervisors fault for loading us up with trainees and expecting everything to work smoothly. I am sick, I may have more wrong with me then I originally knew so I just can't do that anymore. I want to be happy at work again.

Pain is spreading today! BLAH!

[Pete]

Good luck! Hope the pred kicks in in earnest soon. I think it's good that you gave up the training gig. Hoping all goes well.

[NikkiNicole]

Driving back to work after a break, I started to feel weird. I felt dizzy without the world spinning, if that makes sense. I could feel in my stomach as if I was spinning, and I felt clammy and weird and it just felt like my head isn't right. Everything seems not right. The light outside was bothering me more than normal ... and I can't quite think straight.
Not sure if this is just a side effect of the ol' CellCept, if it's Weg's related at all, or if I have some other weird thing happening. I felt weird earlier, like I was going to eventually have the flu but who knows ...
I'm just all kinds of messed up.

[annekat]

It makes sense, the dizziness without the spinning, they are related. I've been having both lately, and have a history of it since having Wegs but am not sure how related it is to the disease. Meclizine helps a lot, get a prescription or buy Dramamine, a lot more expensive. It's some sort of imbalance in your inner ear. It can take a few days to resolve and then not happen for weeks or months, then happen again. Vertigo (spinning) is the worst, especially with vomiting. An ENT is who to see about this if it continues with no known cause. You could have Meniere's or BPPV, both searchable on web. Neither is life threatening. BPPV is common and involves little crystals, or "ear rocks" that collect in sensitive parts of your inner ear canal. There are exercises for it, to re-position the crystals, can find on web. Vertigo is hard to pin down, you will have docs and sites all saying there is not always a known cause, or that there may be many causes. It's frustrating. I'm kinda messed up right now, too, but without any of the pain you've been having, so I guess that makes me relatively lucky.

[Alysia]

It makes sense, the dizziness without the spinning, they are related. I've been having both lately

. I'm kinda messed up right now, too, but without any of the pain you've been having, so I guess that makes me relatively lucky.

I know its Nikki's thread but I am worried about you, Anne, so if and when you feel like sharing how are, please do... sending my prayers & love ♡

[Debbie C]

Nik,,do you think it might be the side effects of starting the pred up again ?Like Anne said it could be your ears maybe you should put an ent on the list of things to do !
Anne,like Alysia said ,you need to take care of yourself also.

[annekat]

Thanks, guys, I've been through this before and am watching it day by day and taking the meclizine. I had a sudden big dizzy spell when reaching up high for something, about a week ago. It turned into vertigo, with vomiting, but didn't last very long; by the time I took the meds it was already easing up. That sounds more like a positional thing, BPPV, where the calcium crystals in your ear need re-arranging; from what I've read, the episodes are short. I've downloaded and printed three kinds of exercises for that and have been doing one of them. I've stopped coffee, because the caffeine is a trigger, though I still start the day with a little black or green tea. Since that initial episode, I feel slightly dizzy a lot and have had three more short vertigo spells, once before waking up and once shortly after, and once in the evening after coming home from the market. None in the last few days. I take the meclizine but need to taper off it, as it keeps you from recovering from the vertigo tendency. It is normal for it to take several days to recover from an episode. My ENT suggests my keeping a journal of the episodes when they happen, which I'm trying, but if you put it off, it's hard to remember. He has suggested that I could have Meniere's disease, which I think my grandfather had, and is mainly controlled by diet. He hasn't mentioned the BPPV, I'm not sure why, since I read it is fairly common. I did have a CT scan and an MRI last year after having had some serious vertigo, and there was no sign of strokes or brain abnormalities. The ENT seems to feel keeping a journal is the best way for him to tell what is going on. I'll see him if this continues. Thanks for your concerns! :smile1:

[Alysia]

Thanks, guys, I've been through this before and am watching it day by day and taking the meclizine. I had a sudden big dizzy spell when reaching up high for something, about a week ago. It turned into vertigo, with vomiting, but didn't last very long; by the time I took the meds it was already easing up. That sounds more like a positional thing, BPPV, where the calcium crystals in your ear need re-arranging; from what I've read, the episodes are short. I've downloaded and printed three kinds of exercises for that and have been doing one of them. I've stopped coffee, because the caffeine is a trigger, though I still start the day with a little black or green tea. Since that initial episode, I feel slightly dizzy a lot and have had three more short vertigo spells, once before waking up and once shortly after, and once in the evening after coming home from the market. None in the last few days. I take the meclizine but need to taper off it, as it keeps you from recovering from the vertigo tendency. It is normal for it to take several days to recover from an episode. My ENT suggests my keeping a journal of the episodes when they happen, which I'm trying, but if you put it off, it's hard to remember. He has suggested that I could have Meniere's disease, which I think my grandfather had, and is mainly controlled by diet. He hasn't mentioned the BPPV, I'm not sure why, since I read it is fairly common. I did have a CT scan and an MRI last year after having had some serious vertigo, and there was no sign of strokes or brain abnormalities. The ENT seems to feel keeping a journal is the best way for him to tell what is going on. I'll see him if this continues. Thanks for your concerns! :smile1:

Thanks for sharing Anne. I appriciate the effort and I am still worried about you.
I remember how scary it is to have vertigo, feeling of loosing ground.
I hope you can have some one to come over if you feel too sick ?
I wonder if its wg connected ? In my case it was. Maybe you should ask your wg doc ?

Time to call my angelic dr. Phil to be in charge of you from above. sending prayers & love. Please take care and update us.

[annekat]

Thanks, Alysia. I do have neighbors nearby who can come over. But it hasn't been necessary, as the vertigo episodes have been short. That part is strange, since they used to be longer, as much as 8 hours one time, even with the meds. I wonder, too, about a WG connection, because I have had damage to my ears, but it is in the middle and outer part, not the inner.... mainly, one ear drum is completely eroded away and there is extra skin growth trying to fill the space. So that ear can barely hear at all even with an aid. The other ear is normal-looking and does very well with the aid. I don't feel like I'm in a flare, but maybe the ENT should look more closely at my inner ears with a CT or MRI to see if there is anything abnormal happening there, or at my brain stem, etc. I have talked to so many people who have had vertigo without having WG, it makes it very hard to guess what it could be. I could see the ENT more often but think I need to keep better journals. I also could try to see some other specialists besides him. Thanks for worrying about me, it means a lot.

[NikkiNicole]

Please keep us posted Anne!! That sounds awful. I haven't had the vomiting yet but I am getting the dizzy spells daily. I can't tell if it's BPPV or just vertigo yet.

I talked with the rheumy again today. So ... here's where we are at. My inflammation markers were high on my blood work so she doesn't want to pursue the fibromyalgia avenue yet. She wants to charge ahead like this is a flare and take the steps to fixing it. I am to continue on the prednisone, go to ENT and have them take a look in my ears and sinuses to confirm if there's any inflammation there (my nasal cavity was inflamed when I saw my rheumy last) so that it's documented by ENT. And then ...

Rituxan.

Before we start RTX, she wants to have all the Is dotted and the Ts crossed with checking everything just because of the potentially dangerous side effects and reactions. I know she's hesitant but she said today that she's tried MTX and CellCept. MTX had too many bad side effects to get by with ... and CellCept is not doing anything to make me feel any better. I can't take AZA or whatever it is so ... we aren't left with many options that don't leave a bunch of nasty side problems.

She still wants to save CTX for big issues.

After talking to her, I started to feel worse again and am once again dizzy, nauseous and feeling like my brain is going to stroke out. It's a very scary feeling to feel as if I am going to just die. Yes, that's how it feels. My head feels like I am fading and I am going to die. But I can't explain that well. I even feel as if that isn't an accurate description.

[annekat]

Currently I'm just dizzy and haven't had the vertigo for almost a week. Relying on the meds like meclizine too much can prolong the dizziness. So I've taken less of them today. I've thought of a couple of things that might help you with the dizziness and hopefully prevent it turning into vertigo:

It could be from eustachian tube dysfunction, which a lot of us have, allowing too much fluid to accumulate in the middle ear. That can affect the inner ear, too, which also has fluid in it, and they are connected. I have been routinely taking pseudoephedrine (generic for Sudafed) to help keep the e tubes open so they can drain. It is an icky drug which it has taken me a long time to get used to, but everyone may be different in that respect. I don't take a lot, usually one 60mg. dose a day, and I have gotten over the jittery feeling it used to give me. It does make my heart rate go up a bit, especially if I take two doses, the most I ever take in one day. I just started today with the two doses because my ears were feeling full, and I have started to feel better after the second dose. Just a thought. Target, at least here, has a very good deal on their house brand of pseudoephedrine in the 48-pack, just a little over $3. It might help you.

Also, I think exercise helps, also taking a hot shower, or anything that gets your heart pumping faster and supplying more blood to the brain, which is trying to interpret the signals it's getting from the inner ears and eyes, which work together to maintain balance. It's hard to think about exercise when dizzy, and I would do it cautiously. For me, it's more just moving around, doing normal things like house or yard work, but nothing really vigorous.

One more simple factor could be barometric pressure, when the weather changes. I think this is affecting me. The weather just changed here and I got that full-ear feeling and pressure across my nose. It has sort of subsided this evening. I'll see how I feel in the morning, and will try not to take the meclizine or will take less of it, will take the sudafed, and will try to remain active, maybe going for a walk. I hope some of this helps. And see if you can get a prescription for meclizine in case things get bad. It's kind of like pred in that it can really help, if you take enough, but you need to wean yourself from it to really recover and get back to normal. And get lots of rest... Avoid coffee but drink lighter forms of caffeine if you must.... I do. Or go ahead and drink coffee if it doesn't make it worse.

The reaction from your rheumy sounds great. So now she is considering RTX; that is good. But it does take awhile to work, and a little CTX in the meantime wouldn't hurt, IMO. But I'm not the doc, and maybe your symptoms aren't bad enough for that. It really helped me when i was in bad shape. I haven't taken RTX. I hope you can get it approved. They might say to try CTX first; I've heard of that. We know the possible risks of that... as for RTX, I've heard of some worrying about it, but it seems like most people's docs just go ahead and do it and most on here have gotten good results. Good luck!

[Alysia]

Dear Nikki,
I am sorry for your sufferings. Too much. Too long. I also think its a flare. I am glad your doc finally decided to give you rtx. For some of us it work fast so there is a hope around the corner. Hang in there.
The feeling in the head sounds familiar to me, I had it when I had ears and sinus inflamation.
Maybe 20mg pred daily is not enough at that point ? I took between 60-30 during flares. Dependes on how severe it was. My doc prescribed the pred in many variations like: 60, 50, 40, 30, 20, 10 or 30 for a week, then 20 for a week, then 10 for a week. There were more variations. You need to find what works best for you. Sending prayers & love ♡

[drz]

The Wegs impaired my balance when it took out my hearing on my right ear. It was a granuloma that developed in the inner ear i guess that caused the hearing loss and vestibular hypo-function. This made me dizzy and caused some vertigo and spinning sensation in my vision when i would turn my head quickly like when driving so it was a big concern and i didn't drive for a year after Wegs hit. I got some vestibular rehab that really helped me. I still wobble a lot when I walk and fall over if I close my eyes from loss of balance but other wise I have adjusted to this part of my "New Normal".

[mishb]

Arrgh, I knew that bloody dog was waking up :crying:

I agree with Alysia that the 20mg pred is not enough but I'm so glad your doctor has dropped the fibro angle and is concentrating on the sneaky WG.
I hope your ears and dizzy brain feelings clear up soon, and hurry up and bring on the RTX?

Sending some big hugs your way :hug1::hug1:

[lag713]

Sneaky wegs indeed!

Nikki - I'm so glad that you'll be starting rtx soon. I think that makes sense based on the way other doctors have described the heavy hitters in the following order CTX > RTX > MTX > AZA. So, rtx would be next up on the list to knock this disease on it's a**. I hope it does a spectacular job and you feel better in no time!

[NikkiNicole]

I went to the ENT yesterday at the request of my rheumy so that we can say we explored all the options to pursue RTX without any hang ups. Of course, it was the usually completely frustrating appointment as going to ENT always is. he's always saying my sinus pain and ear issues are migraines.

Really?

So, feeling like I am stuffy is a migraine? Getting dizzy is a migraine?

He checked for BPPV by making me lay down and turn my head, sit up quickly, lay down and turn my head the other way, etc etc. I never got dizzy ... but I did get a headache. (You think?!) He never checked my nasal passages for the inflammation ... when I suggested it he went back to migraines. I was so mad. And then, when I left, I got an email from the GP saying there was a prescription for migraine medications at the pharmacy for me that I have to take 3x day all the time ...

Wait ... what? That sounds excessive for headaches that I don't get.

yes. I get headaches but I most certainly do not get migraines. And, if I do get the occasional massively uncomfortable headache, it's not something I should be taking meds 3x a day for.

In any case, I just feel more frustrated. My rheumy said that even if the ENT didn't note inflammation, that didn't mean I was out of the running for RTX. It just was an appointment I needed to have to get all my ducks in a row so I am hoping that this doesn't derail our plans.

I am getting on a plane Sunday morning. My anxiety is not so great right now but ... I am hoping that it all goes smoothly and I get to actually go on a real vacation (sort of) and then have a smooth flight back and get on with it. This is the biggest challenge I have ever faced down, my biggest fear, and I hope that there is some sort of learning that comes from this. Like ... if I can do that, I can do anything sort of thing. Cross your fingers for me. :)

[lag713]

It sounds like you need to upgrade to a better ENT. :bored:

I hope your vacation is relaxing and helps quell some of the anxiety! My fingers crossed for you!

[annekat]

When it comes time, you'll just get on the plane and everything will be fine. A little drinkie-poo either before or after getting on, or both, will help, if you can do that.

That ENT... I wonder if he dx's half his patients with migraines just to avoid the time and effort to really figure out what is going on? It would be nice if you could get a new ENT.

I'm a little afraid "they" will say you need to try CTX before going on RTX. I don't know if you've ever tried it. Your doc may well be right that is isn't warranted right now and that RTX would put you on a more even keel. I hope your plans aren't derailed.

My dizziness has really subsided in the last week or so. I hope yours has, or does, too. I'll keep my fingers crossed on all fronts.

[lag713]

Nikki - It may be worth looking for a neurologist as a second opinion regarding migraines. Your ENT may be really off base or it could be "atypical migraines" (see below).

I developed migraines about a year and a half ago for the first time in my life but found relief about 4-5 months into cognitive behavioral therapy (CBT) for my anxiety. It took me a while to figure out that I stopped needing the migraine medications as my anxiety improved. I highly recommend CBT to anyone with anxiety (or just needing help dealing with the stress of this stupid disease).

Migraines * ENT Surgical Consultants * Ear Nose Throat Doctors * Chicagoland * Sinus * Joliet * Morris IL (http://www.entsurgicalillinois.com/conditions-migraines-ent-otolaryngology-joliet-in.html)

These “atypical migraine” sufferers may have primary complaints consisting of :

Dizziness/ vertigo/ recurrent BPPV (positional vertigo)
Ear/ head pain (often “sharp” and “stabbing”)
“Sinus” pressure/congestion (seen in 40% of migraine sufferers)
Fluctuating hearing loss
Ringing in the ears (tinnitus) Visual alteration
Gastrointestinal symptoms (cyclical vomiting/ abdominal migraine/ periodic diarrhea)


Anne - I'm glad the dizziness subsided. I hope it stays away for good! Sending you well wishes!

[NikkiNicole]

Well, the atypical migraines do sound more like me. I have ALL those things! But, the ENT just said migraine and I was like "NO!" It makes more sense the way you put it. I do have a lot of anxiety right now with this upcoming trip but the problems started before I even made the reservations or had the trip in mind. So, I know it's not solely based on the anxiety. Of course, this disease brings its own host of anxiety right? not to mention my crazy ass job.
I have made contact with a therapist to start seeing when I get back. So, that will help. There's just so much to get out of my noggin.

I made the decision to take care of me in every way possible recently. I stepped down as a trainer at work. Something I wanted to love so much but hated every minute of. I love my job and want to love it completely again. I am changing the diet to make my body healthier so maybe I won't hate what I see in the mirror so much every day. I am facing this HUGE challenge and biggest fear of my life by taking this plane ride. And, I am going to get a regular therapist so that I can sort out all the things I just sort of keep bottled up because mental health will help overall health too.

If I am going to be sick the rest of my life, I at least want to be happy.

Oh ... and the universe is trying to tell me something ...
I just got an email for a deal on british airways flights to London (where I want to go SO bad) for $823 round trip out of San Francisco.

[Birdie]

Wait ... what? That sounds excessive for headaches that I don't get.

In addition to all the medication side effects, I think you just defined a new type of side effect. Extreme frustration caused by doctors with listening disorders. I know, it's been defined often but not as well as you just did.

"That sounds excessive for headaches that I don't get."

Print it, hang it on the wall, make it into a hand out for every doctors appointment, print business cards, it should be a paragraph added to spoon theory.

(yes, I'm clicking the like button immediately)

[annekat]

I ran across that info on atypical migraines, too, while searching about dizziness and vertigo. I know there are different types of migraines, not all involving head pain. I get 'ocular migraines' which involve a visual disturbance that lasts about 20 minutes and involves no pain. Then it is gone, and usually doesn't happen again for months. I don't relate these to dizziness, but there are many possible scenarios. Your ENT may have some reason to suspect atypical migraines, but it also doesn't seem like he is pursuing all the possible causes of dizziness and vertigo, including Meniere's disease. My own ENT hasn't been all that helpful, either.... if I had the problem more often and more severely, then I suppose he might be more proactive. I've read online that a lot of ENTs don't understand these issues all that well and have trouble pinning them down. Seeing a neurologist might be a good idea.

I solve my fear of flying issue by never going anywhere and not being able to afford to, anyway. The London offer sounds really great. Once you've done the Disneyland trip, maybe you'll consider it.

[NikkiNicole]

I got an email from my rheumatologist this morning. She says she's going to call ENT and have a chat with them about my disease. That makes me happy because he never even really mentioned it. He asked me about my cancer. But, when I mentioned why I was on prednisone and CellCept and why I was there in the first place ... he just sort of skimmed over it and moved on.
Hopefully ... she will get through to him.
Now ... all I have to deal with is the crazy anxiety about Sunday. I'll be fine. It's just getting close so I am having a bit of a time. It's not helping my head feel any better.

[Birdie]

Now ... all I have to deal with is the crazy anxiety about Sunday. I'll be fine. It's just getting close so I am having a bit of a time. It's not helping my head feel any better.

May I suggest an advance field trip to the airport?

Just to get used to the first part of the experience, sit and have an expensive/bad airport lunch, window shop at the gift shops and laugh at all the people running to save 60 seconds. I like watching the baggage carousel go round & round and seeing how excited people get when their bag shows up. Oh, the parking lots are a hoot as well, much entertainment there. :) :) :)

Damn, now I wanna go to the airport.