Prayers please for answers from a test

[Calm]

I am taking a dizziness test tomorrow morning and while I dislike the thought of spewing all over the clinic, I am more concerned that it won’t provide answers, tell me what I have for for sure and maybe even something I can do to make it better. 
 

I would really one day like to be able to sleep on my back again or even, maybe my left side. Right side laying down is getting really annoying, as is not being able to bend down or look up much or at all during a flare. Doing backstrokes and actually swimming rather than dog paddling  again would be nice, as would getting a massage.  And it would be so nice not having to hold my head just so when it is acting up and grab the wall so often or be frightened to walk down the stairs. (I have never fallen, so probably irrational fear.)
 

Though we do laugh at my for real inability to turn left on bad days. (Zoolander reference my daughter brought my attention too).  
 

 It is a difficult diagnosis to pin down from what I have researched, so many similar things could be it. So I could use some prayers nudging the doctors to look in the right direction and my body to cooperate for once and act in ways that will make it obvious.

If you don’t hear from me for a couple of days, I am just probably draped over the toilet, but more likely I will be on the board 24/7 the next two weeks as that is usual recovery time from an episode. 

[bluebell]

Prayers!

[katherine the great]

🙏🏻 Prayers for you Calm. ❤️

[blackstrap]

I assume they have ruled out those pesky ear crystals that can make you dizzy when you move your head ?

[Calm]

1 hour ago, blackstrap said:

I assume they have ruled out those pesky ear crystals that can make you dizzy when you move your head ?

Supposedly it’s Ménière’s disease, which hopefully should get better over the average of ten years. And it is tons better than it was the first year and quite a bit better the second year. I am finishing up my third year in Nov. 

But I think it may also be positional as well even if the Epley maneuver never really helped. So many positional issues.  Maybe it didn’t help initially because the Meniere’s was so dominant and it might help now.  But I don’t like the way it makes me feel, so not going to do it just in case as it may make things worse.  That is why I figure the test could help.

I need to ramble, no one needs to read the following or express sympathy, that isn’t why I am posting this.  Way too much info no one needs to know…unless they too are dizzy/get vertigo and are wondering what it might be. I just feel more in control when I talk about stuff  

I can’t take any of the drugs they use for Meniere’s because of my restless legs disorder outlawing most antinausea and my legs getting weirdly agonizingly painful when I take a diuretic.  Low salt and low sugar diet may or may not help, but boy do they reduce acid reflux and many other little annoyances and help the fibro.

Cannabis worked for 6 months and then backfired (thinking the fibro got worse), but that got me through the worst of the vertigo/nausea.  If I keep stress down and don’t push too hard physically, vertigo incidents are rare.  Last two were caused by physical therapy.

Then there is a weird sick headache that I get (not quite nausea, but like how you feel when you want to throw up but without wanting to throw up) if I just sit upright or stand for loner than ten, twenty minutes, but I can walk all I want, which matches a very rare disorder I just came across, but I definitely don’t have its other symptoms (too low blood pressure at times iirc was the main one).
 

I am used to being a medical puzzle, took 40 years to figure out the restless legs disorder (Internet and me solved that), 4 years fibromyalgia (my daughter has it and her pain doctor took me in as well because of my chronic fatigue (turned out my pain was more than just getting old on little sleep).  Still haven’t figure the chronic fatigue I had since teens, but that is likely just from the restless legs and possibly a finicky thyroid issue (never built up much muscle when exercising until I got on a supplement, was always low normal since teens).
 

This time though it matters a lot. I can handle being tired all the time, having to stay in bed most of the day, being depressed, being antisocial and not being able to accomplish much of anything or have much fun outside of talking to my online friends (this board has saved my sanity) and watching videos.  Anxiety is difficult, but on its own usually distraction is enough. But now it triggers nausea. Fun, fun, fun. 
 

I cannot handle nausea, sick headaches, and panic. I really need an answer. The idea of enduring this for 20 to 30 years terrifies me because as I get older, it will be harder to do the things that keep it bearable.

I do not do waiting well. It is going to be a long night. 

Got a blessing from my husband and son and that really helped. Stress sets off nausea and I was a bit worried I wouldn’t get any sleep, but after the blessing, it is almost a normal night…just needing to talk too much and feeling too sorry for myself.   Writing this has helped as well. So grateful for the board and all of my friends who put up with me and my self obsessions. 

Edited September 29, 2023 by Calm

[blackstrap]

12 hours ago, Calm said:

inability to turn left

Don't apply for NASCAR then !

[Tacenda]

Calm, sorry you're suffering so. I hope you don't mind this lengthy reply. I have a friend that suffers with terrible Peripheral Neuropathy and I shared this video with her on how medication can be a culprit and even cause the disease. At the end the woman in the video mentions Aceytl L-Carnitine that is needed and for the nerves as well, something I've been taking for a few months and have lost 10 lbs and have more energy and maybe better memory too. Along with the youtube below there is this study how it helped with tinnitus and hearing. https://pubmed.ncbi.nlm.nih.gov/25751698/

https://www.youtube.com/watch?v=v04pduGRVDw  Hope it helps! 

If you're not already taking this supplement here are some reviews for the supplements on Amazon which are nutricost and my favorite brand, NaturaLifeLabs . 

 

Texasanne

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I had been taking this supplement for several months (only one capsule per day in the morning) and my mood definitely did elevate. I suffer from Meniere's Syndrome [lots of tinnitus in deaf ears] and Grave's Disease, and the symptoms/complications from same make me plenty tired and cranky, but the Acetyl L-Carnitine helped out in this regard. I stopped taking it for a few days and felt absolutely miserable all over again, so I went right back to taking it. I then came to realize just recently that I can take as many as four or more of these tablets a day, so I've increased to two in the morning and two at night. I've also since read that this supplement can keep thyroid hormone at bay, and that's perfect! I've lowered my Methimazole [for Graves] down to 5mg/day [instead of 10-5-10-5, etc.], and everything seems fine for the time being.

 

 

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I've been experiencing severe headaches, nausea, dizziness, fever, fatigue, lack of energy and extreme brain fog since 2014. I was age 43 at the time. I went back and forth to various Doctors, receiving MRI's C.T Scans and medications that made the condition even worse. I stopped taking all the medications, practiced holistic healing, detoxed/cleansed and went vegan for 12 months. After all that, the symptoms REMAINED!!! I became really depressed and considered suicide because I went from being a very active person to a shell of the person I used to be. On top of that, the pain from the headaches have been totally unbearable. I've been researching so many products, most of which I tried and it never worked; until I came across Acetyl L-Carnitine. I ordered it 11/13/19 and received it on time, 11/15/19. I took 2 capsules with my lunch around 2pm and took a nap because I was exhausted, which wasn't anything new. I've gotten into the habit of taking multiple naps throughout the day (in my car at work during lunch time as well) because I was always so tired. Well, when I woke up from this particular nap, I had a TON OF ENERGY!!! I went grocery shopping, ran errands and cooked. Usually after a nap, I wake up tired and ready for another nap. Thanks to Acetyl L - Carnitine I'm getting my life back at the age of 48!!!! I thank GOD that I was so blessed to find this product!!!!! Thank you Jesus!!!!! Praise the Lord!!!!!!! Amen!!!!!!

 

And Calm, you mentioned RLS in the past, saw this review too. 

 

Carol Hansen Devine

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At about the time I was diagnosed pre-diabetic 15 years ago, I began suffering excruciating nocturnal leg and foot cramps. I've discovered over time that anything that has a diuretic effect on my body, including tea, aspartame, and the low carb diet that puts my carbohydrate intolerance into remission makes a good night's sleep a thing of the past for me. The fragrance of d-Limonene oil absorbed through the skin of my legs and feet dependably prevents the cramps for me and many others. But I've been searching to discover and rectify the underlying chemical deficiencies causing the cramps in the first place. Taking 750mg each of potassium and magnesium each night as many medical authorities suggest was usually successful, but I was still jolted awake a few times a month by cramps. They were promptly stopped with 1/2 tsp of mined sea salt and a glass of water, supporting recommendations of increased salt and water intake with the controlled carb lifestyle. But why was I still getting the cramps at all? I discovered in one of my numerous authoritative books by physicians and medical researchers endorsing the low carb diet that deficiency of L-Carnitine is yet another likely cause of cramping for those of us with carbohydrate intolerance. Adding 1500 mg of Acetyl L-Carnitine to the potassium & magnesium each night has completely resolved the cramping. If I miss this combined dosage a couple of days the cramps return. When I resume the combined dosage, the cramps are eliminated. If you suffer from nocturnal leg and foot cramps, I encourage you to give Acetyl L-Carnitine a try. Highly recommended, affordable product.

 

[Calm]

Woo hoo!  Good news!

We are out celebrating and I am not worrying about salt.  Yum, yum. 
Thank you all!!!

[Calm]

In brief:  bug your doctors if the diagnosis doesn’t seem quite right…never a waste of time in my experience, yet again.  

Not Meniere’s Disease.  Hallelujah.  Don’t know what causes that and I can’t predict what I don’t know…at least I couldn’t even after following what the books told me (though not too diligently, hard to be diligent when not much different), so it made me nervous all the time, especially the stories of people walking along and then out of the blue spinning out and dropping and waking up in the hospital with a concussion from hitting a table on the way down or something.  I was pretty sure it would never happen to me because I figured I had a pretty mild case from the way online sufferers described their other symptoms, but there was always a ‘what if’.  And I was never secure with the diagnosis.  It just didn’t match what I was reading.  Not knowing what is going on is very wearing and added anxiety.

The spinning part is the crystals, BPPV.  That is why it lasted for only a few seconds or minutes and not hours.  What confused the issue was the dizziness and sick headache lasted for hours, but that is the second puzzle rather than the same one.  All I have to do when I get hit with the spins is call the hospital and they can fix it in 5 minutes as he doesn’t want me to do the maneuvers at home as just as likely to make it worse, since different variations may help or hurt different people.  It is not as easy as some doctors want to think.  I hate the maneuver on my own so big plus there.

Second puzzle (dizziness, loss of balance, sick headache) is most likely vestibular migraines, which are also predictable and explains so much about what I thought were the after effects of the spins…and why the dizziness side of it got worse with weather and food and lack of sleep, all things that trigger migraines and especially explains why a massage would trigger a massive episode (minus spins, but major imbalance….like I am drunk), which the doctors couldn’t figure out (I got some strange looks when I mentioned that before) and yet it’s the most reliable trigger for  me.  I always get migraines after a massage, it is no big deal, just take ibuprofen and sleep through it.  Migraines are predictable.  Means no long drives on freeways or crowded streets, but quick trips to the pharmacy, the grocery store, or the rec center on decent days, no problem.  It will be safe.  I won’t kill anyone.  I think it is going to take a bit to get over that fear though.  It is one thing if it is just me, it is so much worse if I were to hurt someone else.

I can sleep on my left side again as it won’t make stuff worse and I can drive because BPPV never gets set off while sitting, still need to be careful swimming, but I like my current routine and backstrokes aren’t completely off the menu.

Keeping with low sugar, but not so tight about salt and not going to worry about occasional indulgences. Going out to eat is back on.

 I could even dance again if I could dance in the first place. 

All that for no barfing, just a wee bit of imbalance due to air not so gently blowing in my ears…not the least romantic; it was quite noisy.  Very weird.  First blasting cool air and then warm.  He always stopped before it got the least bad.  Excellent doctor.  He is in close running for the top spot with my pain doctor.

Easy peezy, lemon squeezey…..

Mild euphoria here…

Probably delayed proper diagnosis a year or two because of Covid as I think I would have been pushier at it not matching as closely, but misdiagnosis is very common with this stuff.  So much overlap.  Not upset because life wouldn’t have been hugely different due to the fibro/rls….just more moving around when I was in bed and maybe taking walks on occasion.  My right shoulder is heaving a big sigh of relief.  I am very grateful that the experience got me eating better, which is probably why it has gotten better the past two years, since better diet made for less migraines.  I was a good eater before, but it got me off sugar again and added a massive daily salad, which really upped my veggie intake, as I am not fond of broccoli….or cabbage….or celery…or asparagus….or spinach…you get the picture.

Life is good, people.  Thank you all for putting up with me.

Edited September 29, 2023 by Calm

[Calm]

3 hours ago, Tacenda said:

Aceytl L-Carnitine that is needed and for the nerves as well, something I've been taking for a few months and have lost 10 lbs and have more energy and maybe better memory too.

Wow, that sounds great for you.  I am so happy.  I will check into that for sure.

Sleep meds definitely make my dizziness worse, some pain meds do too.  Thankfully the swimming has helped me dispense with them unless really nervous about something, so only take them a couple of times a month.

My brother got Vit B toxicity as he wasn’t tracking how much B he got in a couple of his supplements. He was starting to get tingling and numbness in feet and hands, iirc.  Thankfully it went away after he stopped it.

One of my drugs has made me over sensitive to pain, not a good combo with fibro.  If there was another option, I would be begging for it.  Not at this point, but possibly in the future.

Now the dizziness source is most likely identified (my regular doctor might want to deep dive to pinpoint triggers or something), I am going to give the drug my pain doctor wants me to try a fair shake.  It makes the dizziness worse, but that is only supposed to last a few weeks.  Now I know it won’t make stuff worse (assuming it doesn’t set off migraines), I am willing to try it for real.  If this works, it may allow me to switch to a different pain med that has few side effects than the one I am taking now.