CallieAndToby

8 hours ago, Castorp said:

Thank you so much for your replies.

@supertired, in my opinion IVIG is clearly worth trying if there are signs of autoinmunity (e.g. positive antibodies,...).  In fact, IVIG  has been used increasingly with significant efficacy in the treatment of autoimmune forms of dysautonomia and small fiber neuropathy. As an example,

https://www.karger.com/Article/Fulltext/498858

Unfortunately, there is not one-size-fits-all solution in these diseases, and not all patients improve with IVIG. Nevertheless, theoretically failure to respond to IVIG does not preclude a  positive response to other immune-modulatory therapies such as plasmapheresis, rituximab ororal immunosupressant drugs (e.g. Cellcept). However, taking into account the potentially serious side effects of these other treatments, I think that it is a good idea to start with IVIG.

I have used acetyl-l-carnitine and coenzime q10 because their ability to enhance cellular energy production. Nevertheless, as with all the treatments I have attempted during these two years, these supplements did not have any effect on my crushing fatigue.

In view that currently I have no treatment,  I am thinking about attempting mestinon again.@RecipeForDisaster@supertired, what dose of this medication do you take? How long did you have to wait before see the effect its effect?

Thanks again for your help.

 

What kind of antibody testing are y'all getting? Even after the positive small fiber neuropathy biopsy results, nobody has done any further digging or antibody testing and IVIG helped me in the past with dysautonomia but I only got approved for 6 months for autoimmune encephalitis. It's too expensive as well and the insurance companies don't want to pay for it, a close family member has an FDA approved condition of primary immunodeficiency and she can't get it either but has constant infections. I personally can't tolerate any immunosuppressive medications (steroids, rituximab). 

I have it all the time as well. Haven't found a solution. It definitely has something to do with the autonomic dysfunction in my case. I went to an ENT and they did some testing and diagnosed me with vertigo as well. 

I'm going to follow this thread too, I'm a very complex mystery case and I can't really tolerate the autonomic medications and they don't help in me being upright. 

So I was diagnosed with ME (myalgic encephalomyelitis) by 3 different physicians and it does usually involve post exertional malaise which is basically crashing and getting very very sick (or at least more fatigued) after any physical or mental activity. Though to receive a diagnosis there is a huge packet your physician has to go through and there is a lot of testing involved. I.E. they look at natural killer cell count and function, B cells, T cells, cytokine levels, potential chronic infections which is also hallmark of ME but some people don't respond to the treatment but over a decade ago I tested positive for Parvo and different strains of coxsackie. I am extremely fatigued too, it's just insane.

IVIG did help me in the past, saline infusions as well, and I was just diagnosed with small fiber neuropathy but no word from the physician who ordered the biopsies. There isn't really a concrete treatment for ME and it's so complicated, there's just no funding over here for this disabling disease but many patients get help from different things sounds like you've tried some with the LDN, anti-inflammatory medications, etc. 

Some ME patients have found through geneticists (genetic testing) that they have Mitochondrial disease. I don't really know the treatment for this but causes bad fatigue starting at a cellular level. 

On 3/22/2022 at 6:34 AM, RecipeForDisaster said:

Okay, that makes me feel better! I remember that you said that. I don’t have hyper POTS and didn’t even have out of range epinephrine/norepinephrine/dopamine. I just want to sleep! I feel like I’ve had lots of caffeine before bed.

I didn't have a good time with clonidine either because I felt extremely vasodilated and actually got insomnia because of it, but I found that a very tiny dose of naproxen cerebrally vasodilates and give me a similar effect. It just takes time to find the right dose, I only take a tiny piece but it does help and doesn't cause such insomnia and tiredness just feel more relaxed and helps with headaches. It's a NSAI and some constrict but the naproxen dilates. 

On 2/20/2022 at 8:38 AM, RecipeForDisaster said:

I have very low BP and don’t have hyper POTS. I have dabbled in CBD without any effect. Fluids are the most helpful thing for sleep, but since I can’t have PICC or port, I have to use them as little as I can.

The only thing that helped me was CBD gummies and only 2 brands out of 20 helped but they have since quit working, really sucks because that was the best sleep I was getting. My doctors won't prescribe saline infusions even at an infusion center and they are super helpful for me as well. 

4 hours ago, Jyoti said:

I saw Kamal Chemali several times over the past year make presentations on SFN.  He is Lauren Styles neurologist, I believe, and well-regarded by most.  I don't know if you have seen him speak, @CallieAndToby, but if not, it might be worth your time.  I am not sure this will speak to your experience directly, but there may be a point or two you can glean.  https://vimeo.com/479508085 

Thank you both for the recommendation. I'd like to hear him speak on this.  

17 minutes ago, RecipeForDisaster said:

I’m booked for a biopsy in August, and I have very high IGG vs. FGFR3 which is connected to SFN. That’s part of the Washington University neuropathy panel, if you can get that. I have no reason to have it either. I assume it’s autoimmune with that antibody showing up, but no one really knows.

Acetylcarnitine and alpha lipoic acid have helped my burning neuropathy symptoms, at least. But I now have trigeminal neuralgia as well, so I’m on carbamazepine and Lyrica. I don’t think those have helped the neuropathy.

Thank you for the info. I've never heard of the neuropathy panel but I definitely need somebody to take a good look into this and do further testing! I have had some autoimmune labs pop up as positive in the past (Anti DSDNA positive twice and anti GAD positive). My pain started in my bladder, then my shins (so awful), then my hands. They even did surgery on one of my shins a long time ago and it didn't help so it's nice to have answers but I don't understand why this wasn't checked before with my constellation of symptoms. My mother actually requested the testing by mouth and by written letter. Let me know how the testing goes! Hopefully we can both find some answers and/or good treatment. 

So I finally got a biopsy last week and it came back positive but I don't know if it's autoimmune related. My pain started when I was a teenager so I've tried many of the antidepressant / pain meds and they just don't work (Cymbalta, Gabapentin, try-cyclics). I also read that SFN affects bowels, bladder, GI tract, autonomic, and those are all major issues for me so I'm looking for more of a resolution and not just treat the pain. A lot of websites say that there is usually a root cause (unless idiopathic) and they list many diseases and disorders but I wouldn't know who to see to investigate all that was mentioned. I don't have diabetes or pre diabetes which is mentioned a lot so that can easily be ruled out. Wondering what others on the forum have done? I don't know much about this. 

18 hours ago, Sushi said:

Even a tiny dose of Klonopin almost immediately relieves some of my worst symptoms. It can be hard to find a doctor who will prescribe benzodiazepines though. An integrative doctor prescribed it for me. He thought that it affected catecholamine levels. 

Klonopin is very helpful. I have Myalgic Encephalomyelitis and it's been helpful for crashes and all of my friends with ME take it as well. 

Edit add: I have a newish psychiatrist and when I asked for a klonopin refill he screamed and ranted at me for 30 minutes. I've never had a medical professional talk to me like that! He accused me of being an addict even though I've taken klonopin at 1mg for the past 10 years and Xanax before that. I've never abused anything in my entire life. It was a very hurtful exchange. He said he won't even treat patients who take klonopin. I tried to explain the physiological benefits and I told him that all my ME/CFS + dysautonomia friends take it and get a lot of help, he just kept spouting out angry nonsense. My neurologist and oncologist have no issues with my medications! Has anybody else experienced this? 

I've had good experiences with Xanax and Klonopin, valium for me was too next day sedating but it's different for everyone. I think the benzodiazepines have been one of the most helpful things I've used so it's definitely worth a try. If you do have sedation issues, Xanax has a much shorter half life (the shortest in this class). 

None of my doctors really told me how much salt to add to my diet but they all told me to increase it and I've just found what's worked for me. Dr. Randy Thompson got me started on dissolvable salt tablets that you put in water and drink and told me to do that 2-3 times a day; they can be bought at health food stores. And as @GasconAlexmentioned, certain foods are already high in sodium like canned soups and canned meats, etc. Sorry I can't be more helpful, I was never really given a number. Electrolyte drinks are really helpful for some but they flare my bladder because I have interstitial cystitis (can't tolerate potassium or citric acid) but if you can handle drinking them they definitely have a lot of good stuff and were specifically created for athletes. There are probably some resources online with recommendations on amounts.

17 hours ago, DizzyGirls said:

My daughters have had vertigo for about 13 years.  My oldest was 12 when it started.  Both use several things to keep it at bay.  That being said, they don't ride in elevators...EVER, can't use computers or tablets (phones are ok in very small amounts of time), reading is difficult as the horizontal text on the page is wavy to them and the words jump out, clothing patterns are a problem, etc.  The Epley maneuver does not work on them.  Theirs is from their nervous system, not inner ear.  

Keeping a check on bp is important,  too.  A lot of times their bp is low and end up with both vertigo and lightheadedness.

I'm not sure if mine is an inner ear problem either. My laptop doesn't bother me but being in a moving vehicle or anything moving is really bothersome with the vertigo and crashes me. I'm still looking for answers. 

On 2/15/2022 at 11:26 PM, KiminOrlando said:

How did it go? Looks like. I may be headed back there. My dysautonomia doctor in SC retired.

I was too sick to travel by the time my appointment arrived. It's quite the distance for me so I didn't make it. There is a really long wait time but hopefully you can get in, best of luck. 

CBD has helped in the past with deep sleep, I definitely suggest CBD but talk to your doctor first as it does increase certain neurotransmitters. 

On 1/30/2022 at 7:32 AM, RecipeForDisaster said:

I had to change my LDN to be taken in the morning, because it kept me up, too. I  have read the same thing about vitamin D - something about inhibiting melatonin. I take that and B12 in the morning. I eventually stopped LDN after a couple of years, because it wasn’t helping me. It sounds miraculous for many people.

The LDN was making me tired and sick but also insomnia so I couldn't tolerate it like most things. It is known for causing insomnia so I just wanted to mention that. 

On 1/31/2022 at 7:12 PM, yogini said:

Sorry just seeing this.  I would definitely see a sleep specialist as they can best get to the bottom of the issue and they will know a whole range of treatments you many not.  It may also feel like adrenaline is keeping you awake but it might actually be something else 

I have seen sleep specialists many years ago but I've tried everything including xyrem. My sleep study in my early 20's showed constant alpha intrusions and really high heart rate in my sleep which lead to dysautonomia diagnosis and beta blocker (that did resolve heart rate) but they didn't have any other advice. It never feels like I've slept. CBD gummies were really working for me for about a year and that would give me a deep sleep but they suddenly quit working. I'm also drugged and over sedated all the time. My head also hurts terribly from the lack of sleep. I will say that they won't give me anything for pain and people have what is called "painsomnia" but they have taken pain meds from everyone and I have very severe chronic pain all over. Thanks for advice. 

I'm experiencing the worst insomnia of my life for the past 3 weeks. No changes are being made to my medications even though they are now activating me at night. It was confirmed I do have Myalgic Encephalomyelitis but that was diagnosed 15 years ago by Dr. Klimas and Dr. Lapp; most patients in the ME community have extreme trouble sleeping but especially non restorative sleep. I tried medical marijuana in RSO oil form and indica gummies separately but both made me extremely wired and agitated which is the opposite of what it's supposed to do but both marijuana and CBD increase neurotransmitters in the brain and that hasn't fully been studied or understood. I'd like to take something that doesn't affect neurotransmitters because I'm so activated. Has anybody had luck with an actual sleep medicine specialist? I saw some pulmonologist sleep specialists but they are looking at everything from a sleep apnea stand point. 

17 hours ago, KelseyisPotsitive said:

Thank you for sharing this cocktail on non-scary meds I already have in my cabinet.

Low dose naltrexone is known for causing insomnia, great medication but neither I nor my friends could tolerate it because of the sleep issues it causes. Just thought I'd mention that's a major side effect. Although I've met on person who said it helped them sleep. 

Vitamin D also seems to be activating and energizing for most people, that is something I take in the morning. 

16 hours ago, Sushi said:

I do go to physical therapy and after a session my vertigo is gone, but it returns the next day. For me, it is jumpy vision—if I turn my head, for instance, my vision jumps around and I lose my balance. This makes walking very unsteady.

I do fall a lot. I really can't differentiate between all of the symptoms and what's causing them. 

49 minutes ago, Sushi said:

Yes, I have vertigo. I haven’t figured out how to manage it though. Antihistamines do seem to help but it is a big problem for me. I have NMH rather than POTS.

Thanks for responding. Yea they told me the solution was physical therapy but there must be more to it than that. I'm sorry you haven't found something concrete to help. What are the symptoms you attribute to vertigo? 

Never knew I had vertigo? But their solution is physical therapy which is not something I can do right now. I went for allergies months ago and they did a bunch of weird testing on me only to find out I have vertigo, anybody else have this diagnosis? I found a study that showed 46% of its POTS participants had vertigo. 

17 hours ago, Bailee said:

Recently diagnosed with pots. My blood pressure was normal I’ll left numbers below however I’m still getting lightheaded. Is there a difference between low blood volume and low blood pressure? I’m on ivabradine so my heart rate doesn’t go up as much but the blood still isn’t reaching my brain I guess. Please help I’ve been miserable the past week and unable to even stand and walk for long .

 

Sitting 5 minutes blood pressure 105/73

 

Standing for 1 minute: blood pressure 102/72

 

5 min standing 

had to sit early Dizzy lightheaded fatigue Blood pressure 109/85

 

 

I have the same issue! I was told by my doctors that once my blood pressure was stabilized and I take the vasoconstrictors I could be upright more and I can't even sit up for long, when standing and I start losing cerebral blood flow and get syncope within minutes. I told them I've blacked out while supine and they blamed it on blood pressure but my mother took my vitals at that time as I felt it coming on and my blood pressure was totally fine. I'm also confused. 

21 hours ago, MikeO said:

Sorry to hear that Mestinon caused you to become constipated when i was taking it i had the opposite reaction but saying this drugs do affect people in different ways.

Back when i had my bypass surgery i became very constipated and had tried every off the shelf product with no success so, tried Grandma's remedy (good old fashioned prune juice) and it worked!

I hope you find something that works for you soon. Hang in there!

thanks, my mom did buy me prunes but it hasn't worked yet

I've been reading up about how patients with Myalgic Encephalomyelitis have a lot of trouble with GI motility. It's been an issue with me for a long time, even when I was able to hike for 2-3 hours several days a week I still had horrible constipation, I've seen many GI doctors with no real answers. My PCP has referred me to the undiagnosed disease program so just hoping I can get in. 

Just wanted to add that myrbetriq, midrodine, and mestinon also cause severe constipation for me. I am on the lowest dose myrbetriq and it's been days of constipation and I'm taking everything under the sun but these medications really affect my bladder and bowels and I'm not sure what to do. If anyone else has had this issue pls let me know. I'm already taking stool softeners, Mira lax, occasional fiber b/c stool gets way too soft, magnesium, stimulants seem to have no affect. 

Yes. I get really sick after getting blood drawn even just one tube. One time they took like 20 vials and it took a long time to recover. It always makes me quite tired for days. But saline infusion would help. 

22 hours ago, CJ65 said:

I had a good experience at Vanderbilt with Dr Biaggioni and his NP Megane. I went to rule out baroreflex failure and Dr Biaggioni is one of the experts. Vanderbilt is one of the top places to go for dysautonomia so I would keep the visit. Since my appointment they have been great about answering questions. The only hiccup was I didn’t get clear instructions on holding meds for the autonomic testing. I did know from previous testing that I needed to hold but clearer instructions would have been beneficial. I’d jot down some questions beforehand and bring with you since it’s tough to think clearly when you’re off meds/stressed. I was also able to get visit notes soon after to bring back to my team in CA. Testing is tough but it can help us get clarity if you can power though. 

Thank you.