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DizzyGirls

Need Advice from the Best Armchair Medical Detectives!

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I'm trying to put together all of the symptoms and possibilities of ways that might help my 20-year-old daughter.  I've been writing here and there about different things, but I think I need a lot of help in putting it all together.  She just keeps getting worse.  So here is what's going on:

New/worsening symptoms:  migraines at least once a day, maybe twice some days.  Her aura is vertigo.  Two migraines a day leaves her with vertigo that is almost uncontrollable.  Rise in temperature - been getting up to 99.6 in the afternoon/evening.  Hr was 121 this evening.  Stomach - being treated for ulcer, is improving.  Possible vulvadynia and interstitial cystitis.  What we thought were constant yeast infections, we think is now vulvadynia.  She's also losing hair (not huge clumps, just mildly), and is more on edge (I know who wouldn't be, but this is not like her).

New medication - midodrine, also her third shot of depo provera

I have a couple of thoughts - Does midodrine cause any of these side effects?  It was helping her hr, headaches, and her ability to be up and around more. 

What about the depo provera injections?  Has anybody ever had problems with vulvadynia, hairloss, anxiety while being on it? 

I am just wondering if a combination of these things are happening from her medicines or if they are just new symptoms.  She's been on amytriptiline for the migraines and it was helping, a lot!  She's up to 40 mg at night and has a cap of 50.  I was noticing that with each depo provera injection the anxiety is getting worse, as is the vulvadynia.  She's had interstitial cystitis off and on since she was 4, the vulvadynia mildly at times since about 12.   The depo shot helps the severity of her periods, but her hormones seem to be very sparatic, which makes her dizzy.  Many of these issues also trigger her vertigo (fever, hormones, migraines). 

I'm throwing my hands up...I don't know what doctor to ask about all this.  How do I get them all in a room so that we can just brainstorm until we figure it out??  I can't, so that's why I'm enlisting all of your help! 

Please, brainstorm away!  My daughter and I thank you!

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Has she had her thyroid tested? A lot of those symptoms match up with hyperthyroidism or graves disease in general. Dysautonomia usually doesn't increase your temperature or cause hair loss from my experience. 

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I don't recall seeing Depo produce any of those side effects, but, we seem to be a patient group that has anomalous reactions to meds. My neuro has me stop a med to see if it is causing a new symptom, then restart of the symptom doesn't go away while off the med. Depo,  unfortunately, wouldn't be an easy drug to do that with. Also, in theory, the Depo should help migraines and any sort of inflammatory pain by stopping the hormone fluctuations over time. Again, that's all theory.

Amitryptiline helped my migraines for a while but eventually stopped working as my migraines progressed. This is probably one of my most elusive problems as we can not figure out what the cause or triggers of my migraine are (except for the changing barometric pressure and I haven't found the treatment for that yet! Lol!) There are other drugs that could be tried as migraine prophylaxis such as Depakote or Topamax, Botox injections. While there are potential side effects with them, relieving/controlling the migraines could end up being a major factor in her wellness as migraines can cause many of the other things you talk about....vertigo, pain syndromes throughout the body, etc.. My bet is my health would be a full 50% better overall if we could control my migraines because of how many debilitating symptoms this causes me. Also, I am now in a situation where we can not break my migraine. I've had a headache since August. It's not a good situation both immediately and in the long term because it significantly increases my stroke risk (and having EDS , that makes me very uneasy), so you don't want to get where I am on this subject.

And, I wish I had an idea for you, but just anecdotally, my hair thinned significantly too through this journey and they don't have an answer for that either. I have thick hair and I had a lot of it (I used to not be able to find barrettes that could hold all of it.) While it still looks like I have a normal amount of hair, it has thinned a lot....no more problems finding a barrette. It was never like alopecia in that there were never bald spots just thinned out. I have started taking a hair, skin, and Nails supplement and that has helped stop the progression (my nails also stopped growing prior to the supplement.)

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Katie,   The amytriptiline worked really well in the beginning.  She was only getting one every couple of weeks, which was great!  I'm not even sure if the cause of the migraines is the midodrine or the depo shot, but, she was doing better in the migraine regard before she started the midodrine.  This is all so frustrating.  Thank you for your input!

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I just wanted to share that from my experience with midodrine it can indeed cause headaches. While other times, when my headaches were from low bp, it would actually help. Its all a balancing act lol! I pretty much have daily headaches with the combined use of florinef and midodrine, but for me not taking them is worse.

I go through cycles where my hair falls out, not a ton, but definitely thins. We believe this is related to my intermittent thyroid problems. 

I hope you can figure some things out!

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I'm also going to suggest thyroid testing. Make sure she has a full panel done, because a lot of the standard checks will turn up nothing, even though so many of the symptoms match thyroid disorders. 

The depo is interesting. For some people, any form of birth control can make depression and/or anxiety symptoms worse. I think this has been the case for me and am now trying to do without BC after being on it for over a decade. 

I would also take a close look at her diet. For me, dropping gluten and dairy and refined foods made a HUGE difference. She may have some food sensitivities that are contributing to these symptoms. I went full-on Paleo for a little while and really saw improvement. You don't have to go to that extreme, but I think it can be very effective to limit anything processed or refined for a while to give the body a blank slate. This should give the body more energy to heal other issues since it isn't dealing with a barrage of other stuff to process. Probiotics, magnesium, and vitamin B complex helped me quite a bit as well. Does she take supplements? 

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Thank you all for your support!!  It is true that most of us do not respond in a textbook manner to most things.  We are the rare 1% of just about anything.  My husband and I had to take my daughter in to the ER last night because the vertigo got so bad that her body sort of freezes in one place.  I think the muscles do this to hold the body still.  One minute we were taking pictures of the beautiful night sky and a few minutes later she needed to go to the ER.  We didn't get home until 6:30 this morning.  When people talk about pulling an "all-nighter", I don't think this is what they meant!  They gave her a migraine cocktail of valium, reglan, magnesium sulfate and some good ol' saline.  She was out like a light.  It was nice to see her peaceful and watch as her eyes were still and not darting around like they do with the vertigo.  We are probably going to have to re-evaluate her migraine protocol, also.  The amytriptiline may not be helping as much as we thought.  She's tried topomax before, too.  It didn't help and it made her so lethargic.  More so than some of her really heavy duty meds that she takes now.  Or maybe it was just the combination of everything. 

We paid careful attention to how she felt today after she took her midodrine tablet, and within a half an hour her eyes were pounding and head was hurting.  Think this is a drug we are going to have to do without.  It's funny, because when she was first taking it just once a day, it was actually helping her headaches, not causing them.  I think ANCY has a point, sometimes it depends on what the bp and hr are doing as to when you should take this drug. (Btw, I hope you are doing better!)  I also agree with those who suggested thyroid testing.  The complete, extended version!  Also, we do eat pretty healthy and don't really eat too many processed foods because she is lactose intolerant and most foods have some form or the other of milk.  Also noticed that prepackaged things that have a lot of ingredients in them always made her stomach upset.  We do take a Super B Complex, and about 4-6,000 ius of Vitamin D3.  Also probiotics have long been a staple of her supplement regimen and she actually takes 800mg of magnesium a day!  I think I'd be up a creek if I took that amount, but she does fine with it. 

We have a little time to decide on the depo shot, whether we want to continue that or not.  We are only a month into this last shot, so she'll have to decide in the next month and a half whether she wants to go off of it or get another one. 

Thank you all for your help!  Any other thoughts or suggestions are always welcome!!!

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No, they didn't, but she had one done a couple of months ago (referred by her neurologist) and it came back ok.  Her vertigo is just off the charts right now.  She keeps thinking things are falling over because, to her eyes, everything is moving.  Once the meds from the ER wore off, we are heading right back where we started.  I just need for somebody to stop her from spinning.

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By the sounds of this it seems to me like it is most likely med related. Both Amitriptyline and midodrine have strong, well known side effects.  Amitriptyline lowered my standing BP, made more tired and spacey, increased my irregular beats, and after a month out of the blue I was in tears for 3-4 days.  I think katybug has a good point about talking to the doctor about dropping a med to see what is causing this.  I did not like how the midodrine made me feel.  I think I remember seeing something about midodrine causing problems in patients that had a hypoadrenergic component to their pots.  I hope the docs are working with you to find an answer soon.

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Hello again Dizzygirls

Amitriptyline was prescribed for me for vestibular migraines (which can cause both vertigo and dizziness) but I couldn't take it because it was contraindicated with one of my other meds. I was taking Midodrine at the time. I always always check with my pharmacist before starting a new med no matter what the Drs say.

The only side effect I ever had from Midodrine was tingly scalp but that doesn't mean she hasn't developed an intolerance to it. We are all so sensitive to meds it seems.

As far as the Depo, in my experience any type of hormone drug could cause hair loss. Another thing that I have read can cause it is low BP because of lack of blood perfusion to the hair follicles.

A couple more thoughts and if I am being redundant to other posts forgive me ... My eyes are strained and it was hard to read every word.

Has she had any imaging done? MRI? Or vestibular testing to rule out ear/inner ear problems? Probably not that but always good to rule things out. If she is having vestibular migraines (can occur with or without head pain) the vertigo or dizziness is excruciating. I can tell you from experience that it trumps any other dizziness I experience. It makes me completely dysfunctional.

Sorry you are all going through this. I hope you get answers SOON!

Hugs ?

Kaitlyn

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In my research on occipital neuralgia tonight, I came across a condition called cervical vertigo. I didn't love the site I was on but it might be worth looking up to see if it fits the vertigo pattern. 

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Hi all!

So we dropped the midodrine.  Seemed to be the culprit of the pounding headaches in the morning about an hour after she took her medicine.  Also, went to our chiropractor today and she noticed that her neck, at the base of her skull, was "squishy".  Huh??  She called it "snowball crepitus".  I knew the term "crepitus" from my youngest daughter's experience with a "pneumomediastinum" (another story!) a couple of years ago.  She said that there was so much inflammation at the cervical area of her neck that it was kind of crunchy and squishy.  She said that it could be a big contributing factor in her vertigo issues as of late.  We had explained to her about our "all-night" ER visit for her vertigo and migraines. 

So, Katie, I think you hit the nail on the head.  I had started to read your article that you had posted, but was interrupted with dinner.  I did read enough of it to figure out that my mom fits very nicely into the occipital neuralgia box.  I, too, had stumbled across some very convincing information regarding cervical vertigo a number of months ago.  I think with the information from our chiropractor, it would make logical sense. 

I never have thought that it was coming solely from her inner ear.  Just didn't act like it.  She's had MRIs, CTs, EEGs, EKG, TTTs (talk about making her vertigo mad!) .  We haven't had vestibular testing done because you have to be off of meds that keep her vertigo calm.  She's just too sick to do that and not in any shape to go through those grueling tests.  Kaitlyn, yes, vertigo is one of the most debilitating symptoms that they have.  If the vertigo could be kept under control, they could eliminate about half of their meds.  My mom has actually had to go by ambulance to the ER because her vertigo gets so bad.  Both my girls have it 24/7.  Most of the time it doesn't send them to the hospital, but there are those days that it does.  It's a scary thing.

Amalia01, I do think she might have mild hyperPOTS.  Could be why she reacts to some meds like she does.    

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I feel for you trying to figure this out for your daughter as well as going through the emotions of seeing your daughter struggling. 

You (and your dr.) may want to look into depo's long list of possible side effects.  I never tried it because of it sound like.. too much for me though I know it works and seems a perfect fit for many. 

Regarding migraines (and perhaps I am an outlier), I did NOT get relief when on the pill and tried a few different ones over the years.  I struggled with migraines from age 10ish (as I can remember) until finally diagnosed in my 20s and finally started trying medications around age 27 (I am in my early 40s now).  My neuro is highly respected in his area and was one that believes (of course drs. all have their theories/perspectives within accepted facts) hormones have little affect on "migraine brains".   I never noticed a change in my migraine patterns whether I was on different birth control pills, pregnant, or nothing at all.  I tried several rescue drugs and preventatives under the direction of the neurologist and finally relented (didn't think I needed this "anti-seizure drug") to try Topamax and have found it to be life-changing headache wise for me.  I'm surprised to hear about lethargy.  I didn't realize that could be a possibility however I know I am often medically sensitive and of course others here can be affected too. I also tried elavil(Amitriptyline) but found no relief and it made me too sleepy.

 

 

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I take Topamax for Vestibular migraines. So much going on atm I am not clear yet on its efficacy. I also take low doses of benzos. I hate taking them but without them I could not function at all because of the acute dizziness that was constant. For me it isn't typically vertigo although I have felt that as well but rather dizziness and imbalance where gravity kind of  sucks you right to the ground. It is the hardest thing in the world to describe.

For acute vertigo promethazine (phenergen) can be helpful to get it under control so a person can get a breather to think again, get through some testing etc

Kaitlyn

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Hi Kaitlyn!

Thanks for the suggestions!  She's tried topamax and it didn't help, she is on diazepam and that does help.  Tremendously!  I'm with you, would rather she didn't take it, but that doesn't seem to be possible right now.  Not until someone finds out the cause of the vertigo.  The phenergan does work well in those acute cases.  She was taking small amounts of it every night, but there was a conflict with her Reglan (help her stomach empty) and was told by her PCP that she shouldn't be taking them together.  So, there goes that drug.  He said to take Benadryl instead.  We are trying that.  I learned a while back from watching some paramedics treating my youngest daughter,  that you can take a heck of a lot of Benadryl before it's "too much".  Wished we could have the Phenergan back, but we'll have to try to do without.  Thanks for your support and the laugh!  Guess it didn't like your word :lol:!

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You're welcome! I know you have your hands more than full. Hope you get on more solid ground soon. Too bad about the phenergen - it can be helpful in an acute situation!

Happy I could provide some entertainment in the meantime. Had a chat with one of the forum administrators. I guess when they realized I didn't use an expletive they decided to loosen the filters a bit.

Gotta laugh - can't cry all the time ?

Peace

Kaitlyn

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