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My gastroenterologist has recommended using Kefir or Kimchi ( or even sauerkraut ) instead of supplements. Taken regularly it can be very effective for gut health and motility if you tolerate it. I also sometimes use Yoghurt, but it should be taken with some oil to assure the best absorption of the probiotics. Plus it is said to also contain Prebiotics, meaning it also FEEDS the healthy bacteria strains in your gut. I take a few spoonfuls of either Kefir, Yoghurt with a few drops of Olive Oil or Kimchi three times a day. It has helped my gut health a lot. My husband does not like these foods so he takes a good quality Probiotic he orders online.

@Knellie I too feel bad with seasonal changes. In the winter I cannot go outside due to the cold temps and fast adjustments necessary going from warm ( inside ) to cold ( outside ) triggering symptoms in me. I am also extremely exercise intolerant, and going outside less can cause circulatory issues and fatigue. The best thing I can do to feel better is exercise! When i cannot go outside I open the window and do reps on my rowing machine three times a day ( whenever possible ). Since rowing can be done while sitting and utilizes most muscles and joints in the body this is an easy exercise for me, and I can do 10 reps or twenty in one sitting, depending on the day. Before I had a rowing machine ( which I purchased relatively cheap online ) I would follow general mobility exercises a Physical Therapist had taught me, to do when feeling poorly to avoid deconditioning. I personally cannot tolerate swimming but many POTS patients benefit from going to an indoor pool regularly during winter.

Hello @Morgan have you read our COVID and POTS link on the main page? It may be helpful to you?

@JennKay wow, that is a really interesting theory! That makes total sense to me!

My autonomic specialist tried most recommended meds for HPOTS with me but nothing really worked until I tried the calcium channel blocker Diltiazem. In HPOTS we suffer usually from excessive sympathetic overcompensation, causing the blood vessels to contrict and therefore restricting blood flow to the brain, along with tachycardia and hypertension. The Diltiazem keeps the vessels relaxed and lowers BP. I n addition I take the beta blocker Carvelidol which helps with tachycardia and palpitations. I am not able to keep oral fluids in my body, since I have an overactive bladder, so hydration is difficult for me. Since this was last resort for me I have a port and get twice weekly infusions, but this is not a commonly used practice and most people do not have to go this dramatic route. Adequate hydration and regular exercise as well as avoiding overstimulation and taking FREQUENT restperiods are important! I used to not be able to sleep due to the high adrenaline levels, but since I have established a routine that allows me to be active yet rest often and when needed I am able to sleep well. I do have a prescription for low dose Ativan that I can use when too stimulated, and some nights I will take one before bed time, but rarely. I assume that MCAS can cause a type of hyperstimulation as well, so your supine and night time troubles may possibly improve if the MCAS si controlled. Are you on H1 and H2 blockers?

@MorganIsASiren I have HPOTS and developed this same inability to lie down during a brief trial of clonidine. Do you take any meds that could be causing this?

I do have pots, but I also have ncs. Actually, my first TTT showed NCS, but not POTS. My second one was deemed normal but later was INterpreted clearly positive for pots by my autonomic specialist. Most POTS patients do not necessarily actually faint, but all ncs patients faint or almost faint, so often fainting points to NCS as well.

@sandra.p29 yes, when I don’t receive enough circulation to my brain from various reasons related to dysautonomia I can’t find words, slur the words or even talk gibberish! Definitely a reason to immediately lie down and rest! I am so sorry that you also experience his scary symptoms. Have you checked your BP when this happens! It can also happen if the blood sugar drops, that also can be a symptoms of dysautonomia. This is usually accompanied by weakness and profuse sweating.

Hello @ellieollieoollie Welcome to our forum! I too have ncs, on top of pots. I think the reason there are not a lot of posts specifically mentioning ncs is because we often just include everything in the term dysautonomia, since ncs and pots and oh etc are all related. But many here suffer from ncs and fainting, I do! How are you managing your episodes, and have you found any treatments helpful? I too am disabled but my episodes are pretty controlled, thankfully, due to weekly infusions and medicines, plus the fact that I am home bound. I am very orthostatic intolerant, so I am not very active, which also helps with the episodes! I am happy you checked in, and there are many people here that know how you feel and what you are going through. You are not alone! Please feel free to reach out or to ask questions or post any information helpful to you!

@Sarah Tee I was just going to respond to @Wanderlands questions but saw that you already hit on all of the important stuff in your reply. Thank you for this great advice!

There are distinct EKG changes that happen with autonomic instabilities that would not be present with hypoglycemia, so they should know to differentiate.

@N-irish I do not drive but even as passenger I get very stressed out from highway driving. Even driving in my rural home state is too much! I contribute this to the overstimulation, which causes an adrenaline rush for me, which in turn is a trigger for my symptoms

@Bailee I agree with what others have said, mostly keep in mind that we are all different, and not one medicine or supplement is helpful for all people. As a matter of fact, most natural substances can have interactions with each other or medications and therefore have to be carefully researched before taking them. I have found that when it is difficult to find the right medication then it is easy for some people to just assume that natural medicine would be more effective. I at times see a chiropractor for a back issue and she dispenses natural supplements for those interested. In my case however she does not recommend me trying any supplements because of both the nature of my illness AND the fact that the supplements could interact with my meds.

@erinlia I have benefitted from IV fluids for many years. At first I would be admitted to hospital overnight for fluids everytime I was so bad that I passed out each time I stood. Right away I became stable and could walk and talk etc. They used to call it my "cocaine". This would happen every 6 weeks or so. Eventually my doc gave me a standing order for 2 bags weekly as needed, and whenever I was bad I went to an infusion center for the IV and it was better. They ran 1 liter over 6 hours, any faster went right through me. Nighttime infusions resulted in me swelling up and the fluids going into the tissue instead of the blood stream, so I needed to be active for maximum effect. Eventually my doctor realized that a port and home infusions would give me the optimal control and improvement of my symptoms. For the past 4 years I infuse 1 liter of LR over 6 hours twice a week and had no episodes or needed hospitalizations for POTS since! Also - we have found that LR is much more effective than simple Saline, the electrolyte combination in the LR seems to keep the fluid in the blood stream longer. With Saline I would pee a lot, with LR I dont, so it gives me more volume longer. It is quite a hassle to infuse fluids over 6 hours during the day but it is definitely worth it for me! You may want to try infusing over 6 hours rather than 2 hours, and see if that helps. I use a plain old IV stand, since I do not have steps in my house, but my sister, who also gets infusions for POTS, has a back pack with a pump and can even go shopping or to appointments while the IV is infusing!

@StaciF I too used to see Dr Grubb but have since "graduated". I no longer travel to see him but found a local cardiologist that is awesome and works with me AND Dr Grubb. I called the university hospital in my state and asked for a cardiologist familiar with dysautonomia. Dr Grubb is very good about answering other physicians' questions, so as long as you have a knowledgeable cardiologist or neurologist they can treat you and stay in touch with Dr Grubb. That way you can see someone until you find a specialist ( but in all reality it is hard to beat Dr Grubb! )

@Sarah Tee I am so sorry you have to have surgery again! I definitely go back to square one anytime I am sick or bedbound for a while. Surgery especially because of the pain and healing ... but even just wiggling your toes is better than nothing, so try what you can! I was advised to try and write the Alphabet with my feet when in bed for long times, it DOES help with circulation and muscles. Depending on where your surgery is you can even try to do this with the heels off the bed. Best of Luck with the surgery, and a speedy recovery!

@Sarah Tee yes, I use the cycling in bed whenever I am bedbound, and it is very good for both strengthening core and leg muscles. If you can't tolerate it for very long try doind it several times a day - this helps to increase your tolerance. I have seen people riding a supine bicycle outside - maybe that would be something for you? You can exercise outside on good weather days?

@mattyb_uk @MomtoGiuliana - have they ever done a cystoscopy to check for Interstitial Cystitis ( IC )? I have had bladder and flank pain as well as blood and/or Leucocytes in my urine every time and once I saw a urologist he did an exam and immediately suspected IC, which he then confirmed with a cystoscopy.

@mattyb_uk here is a link that has a lot of valuable info on the subject of dysautonomia and EDS: Dysautonomia in the Ehlers-Danlos syndromes and hypermobility spectrum disorders-With a focus on the postural tachycardia syndrome - PubMed (nih.gov)

Hello @mattyb_uk - welcome to this forum! I am so sorry your partner is going through this - the symptoms are very scary! --- Unfortunately I would like to point out that currently there is no treatment or medicine that CURES dysautonomia, symptom relief is pretty much what we can hope for. And if the underlying mechanism is EDS - well, that is of course also not curable. Both medication and supplementation are commonly a hit-and-miss ; there is no ONE substance that works for everyone and it usually requires a lot of patience and experimentation to find the individual treatment. Most dysautonomia patients are on medications, but I know of several people with milder types of dysautonomia that were eventually able to get off the meds and just use the usual treatments of extra salt/fluids, daily exercise to tolerance, compression garments. I also would like to point out that in most cases the symptoms wax and wane, and there are times we are better and other times we get severely symptomatic ( referred to as a flare ). Lifestyle adjustments can make all the difference - including diet, exercise and avoiding long periods of standing.

@Sarah Tee for me there is one big difference that I can immediately tell whether I am having low blood sugar or OI: weakness. When my sugar drops I become so very weak! The sweating is also a dead give-away for me. When I become faint I start to sweat just on my upper lips at first, but with hypoglycemia I start to profusely sweat all over. I barely have hypoglycemic events anymore since I started to avoid all concentrated sweets, eat every 2 hours and do not eat large carb-loaded meals. And as soon as I can feel the sugar drop I consume a juice and a protein ( mostly cheese ) and that usually stops it pretty fast.

@MeAgain... from reading what you quoted it means that IF you are deemed disabled you must be able to perform the duties you were hired for in order for your employer to be required to accommodate any adjustments. If eight hour shift are required at the time of hiring and you can no longer perform eight hour shifts then it would be possible for the employer to say that if you cannot work the hours you are no longer able to perform the duties outlined in your job description. In that case they could fire you. In my case I had to bring a doctor's note saying I am not able to work the shift I was hired for in order to be able to claim FMLA for the missed hours. This did not create a problem for my employer and they could easily do that. But lets say I would be working at the counter in a store for certain hours and if I was not there then they had to close the store they have the right to deny this request for FMLA. FMLA is there to protect BOTH - the employee and the employer.

@MeAgain... Your employer is required by law to accommodate any adjustments to your work environment that are due to a disability ( in the US ). If you have to use time off for medical reasons they HAVE to use FMLA, that is a law ( if you used up all of your sick and vacation days ). I also had to stop working ( twelve hour shifts as RN ) due to POTS. My employer was VERY generous and they worked with me and my doctor. First they adjusted my hours ( from 3 12 hour shifts to 3 8 hour shifts ). Then they gave me a job I could sit on a computer all day. When I was no longer able to walk the hall ways they allowed me to use a wheel chair. To adjust the less hours I worked ( plus when I was not able to come into work due to my illness ) they used FMLA. My HR department explained to me that they HAVE to do anything possible to allow me to keep employed because they are not allowed to fire you based on a disability. However - they are right that if you are no longer able to perform the duties you were hired for ( your job description ) they CAN fire you. In my case only once all attempts to keep me employed and all my FMLA was used up did I have to stop working. The reality is that if we are too sick to do what we were hired for we may no longer be able to remain in that position. I was lucky since I had elected Short-term disability insurance and my employer had taken out long term disability insurance, so I was receiving pay once it was established that I had to stop working. If you do not have that but have to stop working there are programs for you to apply for. If your symptoms keep you from working in your current line of work you may want to look for another position that is more suited to your requirements? for me the reason I had to stop was that I was so fluctuating in my abilities and had to call off so often that this created a real problem for the employer ( as you know nurses are vital and if they do not show up for work it creates a problem for the hospital ). Please remember to be kind to yourself! I know for a fact that staying employed and ignoring my symptoms made my POTS a lot worse. No job is worth risking your health IMO! This may be a good resource for you Articles - Dysautonomia Information Network (DINET)

@MikeO if the drop in glucose level at bedtime is correct you may want to consider eating a protein-rich snack before bed time? I know that manual glucometer readings can show an error message if the glucose level is too low - so that may be the reason you could not get the fingerstick reading?

@MeAgain... in my case I requested the FMLA but I only used up FMLA hours once I used up all of my sick time and vacation time. Some weeks I didn't use any and other times I did, so even if you CAN use FMLA for your husband's illness - if you dont miss any hours then they obviously wouldn't be able to use any FMLA. If your husband's health has improved you can let your employer know this, and if now you need time off for yourself just tell them. FMLA is essentially a law that protects your job when you are TEMPORARILY unable to work due to being sick or caring for a family member. However - once you use up the 12 weeks within one calendar year then they CAN fire you, and they are not required to give you the same job back. You can also use FMLA if you are not able to work a whole shift. In other words - if your doctor writes a note saying you can only work 3 six-hour shifts a week then they have to use FMLA for the missed hours.