Advice/help - personal stuff

[susiestar]

Ladies,

It has come to my attention that my body and brain are not functioning. At ALL. I can't seem to get into any doctor but my reg doctor and my rheumy - and BOTH are about out of advice. I can't even sit up some DAYS because I am so dizzy. I do my best, but this just stinks for the kids. Jess and thank you are really good about it, jess especially. But I don't know what to do to function better. EVERY BLESSED THING HURTS has me dizzy, causes migraines and /or vomiting. Some days I have to get up with husband to be able to walk out of our room. I am just at my wits end. On so many medications, not sure what to do, afraid to drive (quite literally afraid I will kill one of my kids or a stranger).

I drink as much liquid as I can to stay hydrated, but cannot eat much more than a few bites, even with phenergan or zofran in my system (not at the same time). Any ideas? Am on Lyrica, pain medications, muscle elaxers for spasms, thyroid medications (levels OK as far as teh docs can tell - still almost 2 months until I see the endocrinologist) Imitrex, and occasionally Lunesta (take more than 2 in a week and don't sleep for 4 days straight - but it works better than the other sleep medications have as I have not been able to sleep regularly for as long as I can remember).

I have had most of the problems since my early teens after a bout of chicken pox (which I can STILL get as I have NO immunity - discovered this while pregnant with difficult child). Migraines have been present since age 4. with-o the lyrica or some other preventative I have one constantly, literally. They go away for about 10-12 hours on Imitrex alone. But hten come back and you can only take a few a week or THEY cause problems.

I am just S I C K of being sick and tired.

Thanks for any suggestions. I don't want another 25 years of this crud. Been 24 and no end in site, but maybe with some suggestions I can get someone to try something new?? I can hope. I have taken both enbrel and humira for over 6 months each with NO results of any kind with either how I feel or my blood work, which is very strange.

Thanks.

 

[gcvmom]

Have you tried any of the other biologics like Remicade, Rituxan, or what about methotrexate? I don't know about ALL the medications, but since my difficult child 1 has Crohn's and many of the same drugs used for RA are now used for Crohn's...

How do you do on prednisone?

Have they ever done a brain MRI to find out why you are having the dizziness and migraines?

 

[flutterbee]

What kind of blood work? Sed rate or specific disease markers such as rheumatoid factor?

 

[susiestar]

I have had every blood test known to man within the last few months - doctor was trying to find SOMETHING other than slightly off thyroid and almost NO Vit D. My body doesn't react to prednisone in any appreciable manner after spending my teens on a ton of it. It jsut stopped reacting.

Biologics after enbrel and humira are judged to be unwise apparently. Methotrexate made me vomit, but did nothing else.

I have had almost yearly brain scan and 2-3 years between MRIs - apparently I jsut get dizzy easliy and have migraines - or so the neurologists tell me.

I did not find that helpful or reassuring. Of course I didn't get preventatives for the migraines until I had had over 15 years of them, so I have pretty much found the other stuff out myself. Lyrica helps a lot with the pain, but less every day and is not as effective with the migraines recently either. Inderal ws teh most effective preventative, but became ineffective about a year after we maxed out the dose - say 3 years on the medication in total. I have been through several of every category of migraine preventative since, with little luck.

The doctor I saw in my teens messed my system up so badly, along with many other women's systems that he was literally run out of town. He died destitute in another state after being refused a medical license. Any of you with medical knowleedge can guess how rarely THAT happens. All he did for me was give me robaxin or skelaxin and huge doses of cortisone - shots and oral as prednisone. My mom didn't have my medical records, so by the time I came back from college and got married I kept my own records. Which show basically, nothing. All opinion except for the 2 hernated disks in my neck that were repaired 10 years apart - the last was fixed last Dec. I am expected to need another one fixed in 5-9 years according to the docs. I could handle THAT - it was rather minor after the 2nd day out of surgery. Heck, they can hack off any part they think will help, as long as I can read and maybe thing again. And hug my kids.

Lately even that hurts like the devil. difficult child liked to squashed me last wee - and he was being GENTLE!!!!!!

Ideas??

 

[flutterbee]

Both lyrica and lunesta can cause dizziness:

http://www.rxlist.com/cgi/generic/lyrica_ad.htm

http://www.rxlist.com/cgi/generic/lunesta_ad.htm

Have you tried amitriptyline for pain? Have they considered postherpetic neuralgia?

http://www.mayoclinic.com/health/postherpetic-neuralgia/DS00277

This article talks about anti-viral treatment for postherpetic neuralgia. It appears that it should be started early on, but thought I'd share it anyway:

http://www.bmj.com/cgi/content/full/326/7392/748

 

[susiestar]

They "say" that the post herpetic nerve pain is different. not sure how, but each doctor I have seen has said it.

The dizziness has been around MUCH longer than any of my current medications except the imitrex. And I take Imitrex so irregularly that my calendar/journal would have shown it with-o the need for major linear regression and statistical calculations. I would also be able to PREDICT the stupid stuff! Or so the neuro says. I keep the journal, and actually had a pretty good time playing with probabilities and things from stat classes over the years (neighbor growing up was statistics professor and would drag me into his summer classes and projects and I also took a number of other stat classes cause after a while it got to be fun- what a GEEK I am, LOL!).

I will ask at my appointment this month about the anti viral therapy though. That might help, or at least not hurt any more than anything else. Thanks!

 

[flutterbee]

One other thing I just thought of because of the migraines. The guy that sold us Devon's car - his daughter is 18 and was recently diagnosis'd with this. They told her for years that she just had migraines. It's rare and often overlooked. (I also saw it on Mystery Diagnosis.)

http://www.ihrfoundation.org/intracranial/hypertension/info/C18

It's called intracranial hypertension and is when the cerebrospinal fluid in the skull is too high.

 

[susiestar]

Too much spinal fluid in the brain? How do they test that? I HATE spinal anythings - give me week long untreatable migraines. So I will have to ask about that.

I do have some mystery infection also. I pops up under the so-called psoriasis scars and is in a pocket on my left thumb pad. Gets bigger, gets smaller, pops out in differnt places. Doesn't culture up to anything, doesn't go away (not in the last year! but doesn't seem to worry any of the docs. They say it will go away when it goes away, put peroxide on it and wash it.)

 

[flutterbee]

Did you click on the symptoms titled Other?

 

[butterflydreams]

No advice, but sending lots of hugs.

Christy

 

[klmno]

Sending hugs, wine, and a night off to relax!!!

 

[DammitJanet]

Hugs susie.

I have no real good advice because I think you are in a bit worse shape than I am. I dont even know how I am going to get by from day to day so I dont know how you do it. I have the same thoughts about facing another 2 or 3 decades of this junk...no thanks. The grands will be grown in a few and I am done.

 

[Wiped Out]

No suggestions, just sending hugs and healing thoughts your way.

 

[KTMom91]

No advice, but sending very gentle hugs.

 

[Nomad]

There was a period of time that many, many medications caused my migraines to worsen. If you reading the prescribing literature that comes with- medications, you will see that headache is a possible s/e for almost all of them. Eventually, I decided to let my neurologist make almost all the decisions on what medications I will take for all my medical needs, because it got too complicated when I would take something for one condition and then have my migraines get much worse. Of course, there are times that it can't be done or prevented, etc. but this is what I do most of the time. In addition, I have found it necessary to take a low dose of Axid, which is now available over the counter almost DAILY. It is not at all pharmacies, but I usually can get it at Walgreens and Walmart. Ironically, I have found that MANY of the over the counter acid reducers actually increase my h/a's or make me feel dizzy. I take this low dosage of Axid almost daily and it has stopped the nauseau (sp?) and dizziness with-o causing headache problems. It took several days on this stuff before I got improvement and then it was great. I also avoid fatty foods, etc...
When will you see the doctor again? Have you the had the opportunity to see a neurologist recently? I do hope that you will get in to see someone soon and will feel better soon as well.

 

[Star*]

Susie,

When was the last time someone looked in your ears? Some of what you describe sounds like vertigo to me.

As far as the migraines - I'm there with you. Relpax is the only thing that helps when I get cluster headaches. I was on an unreal dose of Topomax (anti-seizure) medications for migraines and they seemed to help I went from having 23 migraines a month to 3-4. And 1 crippling migraine about 3-4 times a year. I think Janet takes it too.

Are you on the call me if there is a cancellation I can be there in a snap list at the dr. office? Call 'em what do you have to loose?

I think you need to sit down, and write out ALL your symptoms in one or two word sentences....
Migraines
Rheumatoid pain
etc.....

Then across from that - write the frequency.

Migraines..............every day............stabbing pain l/r side of temple
Rheumatoid...........every day...........aching, pain back, knees, neck

Stuff like that is helpful I think for a doctor -

It could be you are on TOO many medications - they had me on 22 medications a day last year and WOW......too many.
Also - do you go to the SAME pharmacist for ALL your stuff and do they check for drug interactions?

Sending big hugs........
but not the bear hug type -
but that much love
just not that hard of a hug
but you know there is huge love in that gentle hug
right?
okay?
NOW you have another headache? From what? lol

 

[TerryJ2]

Holy cow. I feel for you, Susie ... and Heather, and everyone else with-undx'd conditions.
I will not complain about the bone spurs in my neck, my migraines, and my IBS any more. At least I know what I have, and can function quite well.

I wish I had some advice, but you've gotten some great leads here, Susie.

 

[DammitJanet]

The lyrica didnt touch my headaches at all. It kinda...barely...maybe...touched the fibro muscle aches sometimes. It is hard for me to gauge the severity of my fibro pain because my joint pain is so severe it kinda takes over the other pain unless I am touched in the fibro areas. Then...yoweee!

Topamax does seem to help me more in the headache department and it does seem to help somewhat in keeping the fibro pain to a low roar. I went off topamax for a short time and found out just how much it really was helping me...lol. I still get headaches from time to time but they arent bad bad. I can get through them with fioricet.

I have yet to find a thing that helps with the leg pain really. Well if I could sit in a jacuzzi 24/7 maybe I would feel somewhat better but that isnt realistic and I dont own one anyway. When I am in absolute agony I climb in the tub and soak for a little bit but then I have to get out and the pain returns in triplicate.

 

[susiestar]

Thanks all.

Star, I totally know those hugs, thanks.

Done topomax. topped out on dosage, stopped for a year, tried again, didn't work. Done the outline like star said. Can't keep it straight otherwise - notice all the rambling? It is in the other computer. I will print it before I see the rheumy next week. I take ALL the medications to him at each visit, along with printout from the pharmacy. I have to use 2 - insurance demand. 3month scrips from insurance co, 1 month scrips from local awesome pharmacy - privately owned, 1 of the guys was my pharmacist from when I first got this stuff. They are so helpful, even split my pills from the insurance pharmacy. They actually get updates from the insurance co when they do the billing, so it helps keep that straight.

I really appreciate everything. Very overwhelmed right now.

Susie

 

[ML]

All I can say is that I am sorry to know you are in chronic pain. I can't imagine how much he!! you are in every day with everything you have on your plate. I wish I had advice but I am so out of my element here. I can only offer my ongoing prayers that you find the answers. Big, gentle hugs xoxox ML