Nausea, Dizziness, Headache and Vertigo

Hi everyone,

I have nausea, dizziness and headaches daily. Vertigo is a lot less frequent, thankfully. Does anyone else have these symptoms? And what do you do to control them or stop/help when they happen? Thanks.

Michele

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Hi,
Sorry to hear about your symptoms. I have them too, but I have the vertigo more often. The only thing that can really be done, is to take anti-nausea medication that your Dr will have to give you if the nausea, dizziness and vertigo are too bad. Then ibuprofen for the headaches. I also go to a chiropractor which seems to help me. Good luck and let me know if you find something miraculous.

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Michelle:
I had the very same symptoms for years. Though sarcoidosis was not diagnosed at the time (and in retrospect i am convinced it was related), the neurologist put me on topomax for "atypical migraines." I must say that the symptoms improved though topomax is a tough drug go tolerate. It makes your memory mush and made it difficult for me to even complete sentences. I was on way too much. Now I take a very low dose daily and my my dizzy episodes are less frequent and of shorter duration.

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i was dizzy and very nauseated for over a year. thought to have something to do w/ my vagal nerve, though no one suspected sarcoidosis at the time. i was lucky finally to have it respond to neurontin, though others on this site have not done so well w/ this drug. i still have to take megadoses to control this problem.

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Thanks for your replies. I've taken reglan for nausea and OMG, it caused such anxiety I was ready to climb walls. I tried topomax for the headaches and it didn't work, just bad side effects. Ibuprophen causes stomach pain/upset. I'm a tough cookie when it comes to finding drugs that work and don't cause more problems. I'm going to ask my doctor about neurontin.

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Hi Michele,
I'm Lisa and I have sarc also. I have had or have these same symptoms. I have meds for the Vertigo and take Neurontin. I have also taken an anxiety medication Lorazapan. My vergtio has all but gone away with the medication. Hope you get all your symptoms under control and you feel better.
Lisa

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Hi Michele,

I too have the same issues as you. I suffer from migraines a great deal. I am on Topamax but it took a long time to get it just right so I could tolerate it. For the Vertigo I take Meclizine twice a day. This works very well for the Vertigo and nausea. I have to take the Meclizine first thing in the morning before anything else in order to get the best results. About an hour later I take my other morning medications I hope this is helpful, I know I hate feeling sick every morning. It feels like morning sickness when I was pregnant. Don't need that feeling. Good luck with your search I hope you feel better soon.

Bee63
(Brenda)

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michele - have you found anything which helped your symptoms?

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Hi singernomore,

No, not really. I take between 2.5 and 5 mg. of Valium for the dizziness and hopefully to prevent an attack of vertigo and vomiting. I'm not really sure how much it is helping because I'm still dizzy most every day. I think I don't get vertigo and vomiting much anymore because I limit salt intake and don't push myself hard to get things done (i.e., greatly limit stress). I use HeadOn for the headaches, and while the pain doesn't go away, it cools the forehead and feels good. Is Neurontin still working for you?

Michele

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glad to hear that you are at least a little better. yes, i still take huge doses of neurontin, and it still works - though i can always tell if i am late for a dose.

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Just to throw in some things not brought up yet:
Sometimes nausea is a result of vertigo. Meclizine (antivert) is a good drug for vertigo and so is scopalamine which also comes in patch form (does have some side effects that make reading small print difficult for some people though).
Reglan (metoclopromide) is a reasonable drug for most nausea but I don't think it would be my first choice for anyone with the headache and other symptoms described as I wouldn't consider it the best choice out there. Phenergan is a very reasonable choice for nausea that also can help with headaches. If that fails or isn't tolerated, most insurance companies will approve Zofran for refractory nausea and it is the closest thing to a clean drug that I know of (very, very low incidence of side-effects/ very effective on most nausea).

Topomax and other triptans have this funny characteristic that people seem to go through phases where they are effective for migraines. Once the phase of effectiveness is over a new drug has to be found (often a closely related one will work). Most of the time the old drug will start working again. If you have difficulty tolerating these drugs, though, there are non-triptans out there and even low-dose beta-blockers can be very effective for migraines, atypical or not.

I'd be a little surprised to find that drugs like valium or ativan (lorazepam) work long-term for any of these symptoms. I know I wouldn't normally suggest these for any of the symptoms described as they won't actually fix a thing (I'll spare you all my rant on benzos).

I would wonder in anyone with long term vertigo, nausea and headaches if an actual work-up was done. I can think of several physical conditions/illnesses besides sarcoidosis that cause this and would want to rule them out. A full work up would include a few labs, an office visit with someone who can actually perform Hallpike maneuvers and a neurological exam, and likely a head CT or MRI.

Ok, that's my 2 cents
Hope you're feeling better

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Paradox,
I had very bad headaches and finally started to get vertigo real bad. With the vertigo had nausea and dizziness. My headaches startted first and the doctor put my on Topomax. I had a ct and brain mri and I have a spot on my lower left lobe of my brain that has something to do with T1 of the whit e matter. Other doctors seem concerned but my neurologist does not. She says it can be a common thing and patients with diabetes can get them easily. Then about 7 months later I had vertigo real bad. Everytime I would lay down on my right side my brain would go on a very fast spin. I had the manual procedure done and have not had a problem since. I still get headaches ocassionally that feel like someone hit me in the back of the head with a brick. I can almost feel the pain with my hand while massaging my head. I am so clueless what is going on and some wisdom would be greatly appreciated.

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Hi
I too had very bad Vetigo for about 6 months. It comes and goes. I had a full scale workup with MRI etc and they found nothing unusual except a venus angioma that they say is no problem. Yeah right!!!
I did some physical therapy but it took months and I still have exercises I do. Right when I think it is really gone I will look up at something and get a spin. I have Valium, Ativan and other stuff. None of it works. I just try to lay low till it subsides.
I have had sinus type headaches all my life. My nose starts to get congested and then I get the pain. I just go to sleep because I am so sensitive to all meds I have to take baby doses of them all.
Bunkie

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Hi Paradox,

What's a Hallpike maneuver, and what kind of doctor would do it? I guess I haven't had a complete workup. Two different ENT's think it's Meniere's. Another ENT thought it was vestibular neuronitis. The neurologist I just saw doesn't think I have neurosarcoid. Yeah, valium doesn't seem to help much anymore as a preventative. It's great for when I get vertigo as it calms me down enough to sleep a little and/or just feel better. (I get the impression you don't like that drug much?) That's what happened with antivert, too, at first it worked and then stopped. Heck, about 29 years ago, when I first started getting dizzy, the antihistamine Polaramine worked (but that stopped working years ago).

Can you suggest what workup should be done? I've had several brain MRI's, never a head CT scan. I've been poked with needles endless times (who here, hasn't, LOL?), but I have no idea what labs should be done for my symptoms. As you've probably guessed, I've been through several doctors, and still haven't gotten an answer. These symptoms are ruling my life right now. Thanks so much for your help!!!

Michele

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Michele5:good advice from Dr. Paradox re: "Reglan (metoclopromide)for nausea and OMG, it caused such anxiety I was ready to climb walls." I had the same reaction to Reglan, a drug related to Thorazine, a potent anti-psychotic with lots of nasty side effects. Your anxiety was most likely Akathesia, a severe form of motor restlessness. Which is a type of Extrapyramidal symptom(EPS), other EPS are acute dystonic reactions(muscle spasm), involuntary movements of limbs and facial grimacing, torticollis, oculogyric crisis, rhythmic protrusion and chewing of tongue, bulbar type of speech, trismus, or dystonic reactions resembling tetanus. Rarely, dystonic reactions may present as stridor and dyspnea, possibly due to laryngospasm. If these symptoms should occur, inject 50 mg diphenhydramine hydrochloride intramuscularly, and they usually will subside.

Another reason to take Paradox's advice to avoid chronic use of Reglan: Tardive dyskinesia, a syndrome consisting of potentially irreversible, involuntary, dyskinetic movements may develop in patients treated with metoclopramide.

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clcsj,
MS is very difficult to diagnose. The current guideline used is called the McDonald criteria. It has several characteristics including how many attacks and when they occur in time, where in the body they occur and what is seen on MRI. One of the hallmark features is change in the MRI.
The classic MRI lesion in a single imaging study is a white matter lesion usually distributed around specific landmarks and seen in both T1 and T2 weighted studies (this is just which frequency they look at in a specific "window"). Interestingly, sarc lesions will look the same as MS lesions and is mentioned as something that may cause similar patterns (among a few other things).
In your case it seems they should very carefully apply the McDonald criteria (the neurologist will know what these are and can explain them much better than I) and possibly consider a repeat MRI down the road to see if there is change in the lesions.
In the meantime, most of the treatment of symptoms could still be pursued.

Hope that helps

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Michele,
Valium and ativan are ok, and are listed as potential treatments for refractory meniere's, but the problem is the build up of tolerance over time coupled with the highly habit-forming nature of the medication. It is reasonable for people who have mild and only rare bouts of vertigo, but it really is only useful when the vertigo is active. The danger is that people that use it often may begin to have trouble not taking the medication regardless of symptoms. Because of this I, personally, tend to prefer to try other choices first.

Although there is a theory that anxiolytics like valium suppress the vestibular response that causes dizziness there have been no studies to suggest at what level this happens and how close it might be to where these medications suppress the respiratory drive (which they do as well). There is of course the simple matter that they do relieve anxiety and therefor may just allow patients to worry less about the symptom as well without ever addressing the root cause.
There are several medications for vertigo itself as well as some for nausea as well. Of course there are plenty of medications for headaches and I kind of tackled that more in the last post in this thread.

Betahistine is a fairly popular medication for meniere's outside of the US where the brand name Serc is approved (Canada, Europe) but it is not in the US. This is rather odd as the medication itself is legal. The trick to this is to get a prescription for betahistine hydrochloride and go to a "compounding pharmacy" (you may have to ask your pharmacist if they are one). They will mix this up fresh for you with a prescription. Several studies do seem to indicate that there is improvement in both the vertigo and tinnitus with betahistine, though, so it might be worth pursuing.

Scopolamine is another drug that does a nice job on vertigo. It even comes in a patch form that is worn behind the ear and many novice sailors owe their lack of sea-sickness to that patch. It does have the rather irksome side-effect of sometimes affecting vision in such a way as to make reading small text difficult, but the up side is that it is an actual plant extract (a surprising number of the medications still in use today are actually plant extracts).

Some diuretics work well to relieve the vertigo by decreasing the fluid in the inner ear. My favorite is among that group - Diamox (acetazolomide), which is also great for altitude sickness.

For nausea I do tend to prefer promethazine (Phenergan) because it works in a part of the brain that should help the nausea and headaches both - same for prochlorperazine (Compazine). I would also consider the use of Dramamine, but it has a pretty sedating effect so might be best before bedtime (or again on the high seas).

Some patients supplement with antihistamines because they do help even if they are not fully effective themselves. They can even boost the effectiveness of drugs like betahistine. With the advent of the non-drowsy antihistamines loratadine (Claritin), Ceftirizine (Zyrtec) and Fexofenadine (Allegra) there isn't even as much risk of the post dose nap you might need with benadryl. Vistaril should also be effective in this regard and with less drowsiness than benadryl.

Some people recommend dietary salt restriction to less than 1 gram a day, but I think that's just mean, especially in light of the fact that most heart patients are only restricted to 2 grams a day (less than 2 grams you may not taste food). Nicotine and caffiene have been accused of making the attacks worse - I can't verify this.

There is vestibular therapy to try and overcome the attacks as well - never seen it myself, but it is supposed to be done by a physical therapist familiar with the mechanisms.

The Hallpike thing is a type of test done in the doctors office where they move your head and watch your eyes. It can help diagnose the difference between vestibular neuritis and menieres (among other things). Any GP should know how - every ENT has to know how.

Hope that helps.

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nick,
You are absolutely right about Reglan and its possible side effects. The ones you speak of, however, are so exceedingly rare in the normal adult population that I have never seen them at all. I did once see a dystonic reaction in a child, and twice in the very elderly who were essentially given massive overdoses of it, but otherwise, none of these.
I am more concerned that it wouldn't be particularly effective for nausea from a vestibular origin because of where it has its effect - as compared to say Phenergan or Compazine.
Again, chronically, it's a bad choice because it also has an effect directly on the emptying of the stomach and first part of the intestine - over time that might not be a good thing for the rest of you.

The anxiety Reglan can cause is a whole other issue and is well documented as seperate. That occurs a bit more frequently and you are right that it can be a huge problem for most people and likely the primary reason people don't tolerate this drug.

Be well

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Hi Paradox,

Thanks for the wealth of information. You're the man!

Michele

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Hello Michele

Just recently I passed out from what they say was vertigo. After being rushed to the ER and told I had vertigo..my specialist also told me that those same symptoms may be a sign that my sarcoidosis could be spreadingtomy brain..which has me scared. I am now in the process of testing...just had a lumbar puncture and many others test to see if that is the confirmed diagnosis but haven't gotten the results just yet..I am keeping my fingers crossed. I just want to know if my sarcoid is spreading so that I can learn to deal with accordingly. I have been given Meclizine (antivert) Reglan (metoclopromide) Phenergan and
Topomax but yet none of these really help with the headaches or the dizziness, but as we all know Sarcoidosis affects us all differently. I just wanted to say that you are not alone in all that you are going through and never give up....stay strong.

Each and everyone one of us are going through tough times right now, but God is getting ready to bless you in a way that only He can. Keep the faith.

Be Healthy
MzGloria

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Hi Paradox
You are a a ton of knowledge and very helpful with this suite.
I do have a question. What the heck is a venus angeoma?
Bunkie

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