Can these be MAV symptoms

Specific Illnesses & Conditions VM/MAV
1

I’ve convinced myself I have this Vestibular Disorder. But I just feel like I have so many other symptoms that don’t go with it.

I have the chronic brain fog, dizziness, fatigue. I have high anxiety. I have the 24/7 depersonalization, derealization. I have visual disturbances. I have pressure in my head. I can’t have caffeine at all. Severe cognitive problems.

But I also have frequent palpitations. I can often feel the vain in my neck like spasm.

But I also have

  • GERD
  • Excessive urination
  • Excessive thirst
  • Bruising
  • Digestive problems
  • I sweat a lot
  • Rapid heart beat after eating (I thought just alcohol, like wine, but I realize it’s after sugary foods)
  • Sometimes I have it where everything stops and I can’t breath, but it’s for a split second
  • Sometimes everything goes black for a split second
  • Fatigued after eating

I can’t remember, but like plenty of other symptoms.

I think the Vestibular System affects the central nervous system. So maybe it is from that?

Whenever I check my blood pressure it is usually pretty good.

Can these be MAV symptoms or symptoms from Vestibular Disorder?

2

When I read your symptoms the first thing that came to mind was diabetes, have you been checked for that?

3

There are a lot of things that mimic MAV. From the extra symptoms you describe, I would speculate at several, including diabetes. Because of the possibilities of so many, I would recommend talking to a doc, soon.

4

Lucille8- I’ve been dealing with VERY similiar symptoms since the last week of July 2009. I am still waiting on a diagnosis. I am convinced it is MAV as well.

I have been to ENT, 2 different neurologists, 2 different primary doctors, a cardiologist, the ER twice, blood work drawn 4 times, convenient care 5 times, the eye doctor, the dentist, the gyno. I’ve had an ENG, head MRI, EMG to rule out carpal tunnel & rule out nerve damage due to strange tingling in my legs, chest CT, wrist xray, hearing test, EKG 3 times, tilt table test, sleep apnea test, EEG, spinal tap & blood patch, have a neuro pysch eval next week. All they have come up with is POTS or orthostatic hypotension (can’t get the 2 doctors, that I’ve since left, to agree on a diagnosis)- but I’ve had that and been fainting if I get up too fast or lock my knees since I was 5 (I’m now 26). This is a whole new ballgame.

Anyway… when this all started, I had a fast heartbeat, the neck spasms, poor balance, off/on low fever, terrible heartburn- stabbing back pains that I think now was acid reflux but sent me to the ER, my depth perception was off, sinus pressure, nausea. The cognitive thinking you mention was a HUGE think for me- I felt like I was in a daze all the time- I would lose my train of thought, had no word recall, etc. I’ve had the thirst & urination, definitely had the fatigue- didn’t work for a month because of it in October. My BP was sky rocketing- enough that my doctors put me on BP meds (even with a dx of my BP sometimes dropping too low and fainting). I have a long list of symptoms sitting next to this screen- there are 52 of them, so not going to list them all (unless you’d like- then I’d more than happy too) :slight_smile: . My symptoms, with the exception of a few, changed about every 3 days. I finally had a doctor suggest migraines (I have a history of migraines from when I was about 13-14) and put me on Topamax. I’ve been on that about 6-7 weeks now and doing much better, about 70-80% better- and my BP is back to normal. The doctors ruled out MS and Lyme disease first and this seems to fit the best, especially with my history- my mom has migraines as well.

Hope you figure out what is wrong & start feeling better. I know how frustrated, scared, & sick I was in the beginning and don’t wish that on anyone!

5

Thanks so much guys for the reply.

Several years ago I went to the doctor when the dizziness started. I didn’t know what it is, but it came with extreme anxiety. My chest hurt and I had problems breathing. I had a blood test, and the doctor called me with the results telling me he thought I had hypoglycemia. Well he sent me to another doctor, who then sent me to an endocrinologist. She said she wasn’t worried about the levels. And I’ve had plenty of blood test by pretty much every doctor I’ve gone to (that’s all GP doctors seem to check) and no one else has commented.

I think whatever I have causes my blood sugar levels to drop because I seem to suffer symptoms of Hypoglycemia/ Diabetes. Maybe MAV does cause problems with sugar levels, because notice MAV sufferers have to eat often and are suppose to avoid sugar.

Telisa,
Thank you very much for your long comment. It makes me feel better that I’m not alone. But I have much sympathy for you for suffering with this. I wouldn’t wish it on my worse enemy. I think either one, - MAV can cause problems in your entire body since the brain chemicals are all out of whack or two - most doctors don’t really know what’s going on and over diagnose MAV and the same meds help all kinds of health conditions.

It’s weird you talk about POTS because I just ran across this illness recently, and have convinced myself it might possible be what I have. And then a couple of days ago, I was watching Mystery Diagnosis and it was on. Could be something to look into. I’m not sure. I haven’t had many heart checks besides a regular EKG, but I’ve never done a tilt table test. I’ve had MRIs and CT scans. All were fine. Except the first CT scan I got. The doctor said I had increased atrophy on it.

But I saw another doctor, got an MRI and everything was supposedly fine on it.

I have the same problem were my symptoms are always constantly changing.

I have the same problem where I nearly black out when I stand up, by my doctor attributed that to the BPPV I have. It has gotten better since I’ve had that procedure done. But it’s been coming back some. It’s especially when I’m feeling weak when I’m not eating a lot.

I tried the Topamax, but only lasted 3 days. I was scared of the cognitive effects that come with it on top of the ones I already have. Did you experience that? It also felt like I was being stabbed in the stomach with needles constantly. I was willing to deal with it if it would have helped the other symptoms, but I was afraid it would have caused some kind of stomach damage because it just didn’t feel like something that was normal.

Anyways, if you wouldn’t mind, totally list all your symptoms. It seems like we have a lot of the same.

Thanks so much for writing to me! It helped me a lot, because sometimes I feel alone and crazy. Maybe I’m getting on to something.

Thanks!!
–Stace.

6

Hi Stace,
Hope we can be of some help to you here as it seems like you have many symptoms that may point to MAV. I am curious why your doctor prescribed you topamax as many docs use it for MAV?

best,
lisa

7

Well,
The first neuro-otologist that I saw diagnosed me with PLF, BPPV, and “uncompensated vestibulopathy” (don’t think that’s how you spell it, but basically, just like it sounds, my brain hasn’t compensated for the problems of the inner ear. I complained about having my migraines from 12/13ish on to about right when the dizziness started, about 2-2 1/2 years ago. So he said, and Vestibular Migraines.

He thinks basically all my problems are stemmed from the PLF. I don’t believe in the diagnosis at all, so that’s why I’m seeing another neuro-otologist. I don’t have vertigo and I know my problems didn’t start as an accident. It was a gradual thing started at puberty. Anyhow. He said all he could do for me was give me a diuretic and go on a low-salt diet. I did that, didn’t work. And he said I would have to have a PLF surgery. Couldn’t do anything else for me otherwise. When I asked for meds he told me to see a neurologist to get them. The neurologist I saw for just a short time, he didn’t know much about my case just knew I had a vestibular problem and 24/7 dizziness and I told him a few neurological problems I was struggle with and he gave me Topamax.

8

Lucille, I just read your question and I would say it could be MAV but don’t rule out POTS either. You have to see someone who knows alot about POTS in order to have them rule it in/out. I saw an EP cardiologist and finally got the correct diagnosis after 3 yrs of being told I have MAV. My neurologist could never explain what my palpitations and near black outs had to do with MAV. I am finally on the right track to getting better. Alot of your symptoms sound like MAV but the palpitations, feeling badly after eating, excessive thirst & urination can be classic signs of POTS. Google POTS and see if the symptoms line up. You can check your heart rate at home lying, sitting & standing if your doctor won’t do it for you. Your blood pressure can be fine with this condition. Mine is. I just saw that episode of Mystery Diagnosis too. Wish I had seen it sooner!

9

Gosh, just when I think it’s MAV, I start thinkink its POTS… and vice versa. My real thought is that I honestly have both. The reason being is that when I was young I did experience the classic ‘head in a vice’ vomitting migraine which disappeared through high school & college & could be back in a new form. And also because of the strong migraine auras I have (and the family history of migraines).

I agree with dizzygl that the palpitations, etc point to the POTS. I’ve yet to come across a doctor who was willing to take charge of everything (all reports, etc), put it all together, step back, look at the big picture, & really look at what could be going on. Instead, I have a cardiologist saying POTS, a neurologist saying MAV, a primary saying nasal congestion, a chiro saying a misalignment, etc. It’s frustrating & I have no clue where to go. Even if I tell each doctor what the other doctors say & takes copies of their notes, they seem to brush it off; I’ve been doctor jumping to find one that will help. And on the other end of that, you jump too much and nothing gets done.

As far as the POTS, I was checking my BP at home- with an automatic cuff- I know how to take my BP with a stethoscope but that’s hard to do yourself. I tried to give those readings to my doctor; my doctor blew my off like I was lying or didn’t know how to do it myself. I think it’s difficult anytime there are overlapping conditions to pick what is related, what needs treated, etc. I’ve always had, off & on, palpitations. I remember having them in high school for no reason. They didn’t worry me much & would go away. However, when I got them along with all my other symptoms it really scared me. Thinking back, it was probably just the POTS acting up and I normally wouldn’t have thought anything about it. Next post :slight_smile:

10

Sorry- apparently ran out of room. **I’ve learned with the POTS when everything starts fading to dark red or black, I’ve got about 15 seconds to lay down to blood to my head or I will faint. As long as I do that, I’m fine. My triggers for the POTS (and I hope I don’t get in trouble for straying from the MAV) are locking my knees, not eating & being in extreme heat, getting up too fast, etc. I did have one myoclonic jerk after getting up too fast one time when I was about 21. My legs started marching around the kitchen on their own- I had no control- it was pretty crazy.

Anyway- Lucille- here are the rest of the symptoms:
Neck stiffness, stabbing pain in spine, pressure in head, tingling in hands & arms, poor balance, general dizziness/not vertigo, extreme fatigue, swollen gland in throat, low fever, nausea, ear pressure, ear pain, dry/tough skin, visual disturbances, alice in wonderland aura, tension headaches, ringing in ears, sound sensitivity, clumsiness, frequent urination, thirst, sinus pressure, sinus tingling, sharp ‘zinger’ pains in head 1-2 seconds, tooth pain like cavity- dentist says no cavity, chills, tachycardia, lightheaded, anxiety, insomnia, brain fog, short term memory loss, neck spasms, irregular menstrual cycle, excessive eye watering, became disorientied while driving, shortness of breath, loss of appetite, confusion, facial flushing, sore left wrist, left knee numb, felt water drop running down left- no water though, high BP, felt water soak through pants when leaned on sink- no water though, easy brain overload-if that makes sense! I’m sure I’ve missed a few. Most have come & gone- except the dizziness…

I didn’t have the stomach needle sensation, but I did have pins & needles in my face, hands, & feet that would come & go. Apparently that is very normal for Topamax. When my doctor prescribed it, she said- you will likely be miserable the first 2 weeks, but please please stay on it, it’s a good drug, so unless you are having a severe reaction, struggle through. I didn’t have to struggle but it was a little crazy- nothing too bad, just like my hands were asleep. That has gone away after the drug got well into my body. I do have some cognitive thinking trouble- slow word recall, I don’t form sentences as well as I used to, some forgetfulness as far as short-term, BUT it is better than it was before I started the Topamax (meaning from July 2009 until I started the med), but not like it used to be before all the symptoms started.
----Hope that helps… out of room, again :). Telisa

11

Hi Telisa,

Thank you for sharing so much! On this forum the more the better:-)

I was wondering, what dose of topamax are you on and how many weeks did it take you to reach that dose?

Thanks,
lisa

12

Lisa- I’m on 100mg of Topamax. The first 7 days my doctor had me on 50 mg, then I jumped to 100 mg. (I have read many people with migraines need to start out MUCH slower than that though). I take 50 mg in the morning, 50 mg in the evening. There was a week back at the beginning of December that I forgot a few doses, then had trouble with transferring the rx to a different pharmacy so missed overall about 6 doses in 4 days. My symptoms started up again & I started missing work again. I realized it was it was from missing my doses and a friend said you have to be VERY careful about taking every dose- something about half-life & to be honest I haven’t looked much into that part (but now I keep extras in my purse!). I don’t feel as great as I did before I missed those doses and I did have some side effects ‘getting back on to the med’ even after missing just a few doses, but those were gone after a week or so- like the first time around.

When I told my doctor I wasn’t feeling well, he wanted to bump my dose to 150. After I left his office, I realized it was likely due to missing those doses & decided to give myself a trial & error of taking the same 100 mg for awhile before bumping to 150. So far, so good.

Telisa

13

Telisa - Just wondering exactly what symptoms got better from the Topamax. I am glad to hear that you had success with Topa and hope that you continue to get better and better.

14

Hi Telisa,

One more question… how long were you taking the 100 mg (days, weeks) before you noticed any improvement in your symptoms???

Thanks so much for the info. I really hope you get back to baseline soon:-)

Warmest,
“the other” lisa…lol

15

— Begin quote from “MAVLisa”

Telisa - Just wondering exactly what symptoms got better from the Topamax. I am glad to hear that you had success with Topa and hope that you continue to get better and better.

— End quote

It’s a little hard to say because my symptoms were changing every few days or so, some of them showed up just once & I’ve yet to see them again (stabbing pain spine, low fever, sharp zinger pains in head, left knee numb, water drop sensations). Then some of the symptoms where on for a week, off a week the entire time (ear pressure, swollen gland, anxiety, chills, shortness of breath). Some I’ve had for years (likely related to the POTS- tachycardia, lightheadedness). Some didn’t start until after the medicine- which I’d say are side effects- mostly just thirst is the only lingering one, and when I say thirst- I mean cotton mouth- but not all the time; it just hits & I find myself scrambling for water! There are a lot I realize I left out because I don’t remember where they all go & when the exactly came/went :).

So, what I will say is what symptoms I AM STILL HAVING, that might be easier. I do still get dizzy (to clarify my dizzy- it’s like I’ve had 1-2 drinks & am ‘buzzing’- but not a good buzzing, like a confusing buzzing- or like I have a terrible head cold & you get that feeling of your head being disattached from your body. It’s nothing close to spinning vertigo; I’d say more like a motion sickness dizziness.). I don’t get dizzy nearly as often (it was 24/7- meclazine didn’t touch my dizziness) & when I do, it’s not as bad. I do still get nauseous- from being dizzy. I still have ringing in the ears, which was really the last symptom to develop & is really hanging on for some reason. I notice that it comes with the auras I get… strange. That’s another thing I still have- the auras. Not as many as before the Topamax, but still get them. I have been getting them more & more this week- having one right now- feel like I’m in a straw- crazy!
***Out of room!!! Hope that helps, let me know if you have more questions :slight_smile:

16

— Begin quote from “MAVNY”

Hi Telisa,

One more question… how long were you taking the 100 mg (days, weeks) before you noticed any improvement in your symptoms???

Thanks so much for the info. I really hope you get back to baseline soon:-)

Warmest,
“the other” lisa…lol

— End quote

I started Topamax November 5th on 50mg for 7 days. So that put me on 100mg on November 12th.

I hadn’t been going to work much of October due to extreme fatigue, I went to see my neurologist the morning of November 9th. I was feeling well enough by then that I went to work after my appointment. I want to say it stopped a lot of my symptoms within just a few days of starting it. I’m sure everyone is different though because that seems extreme to see results that fast. I started having side effects from the Topamax within just a couple of doses though & that lasted for about 2.5-3 weeks.

Thanks! I wish we could all just get better :slight_smile:

Telisa