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  1. Today
  2. @sfthriller - a couple of things you mentioned in your post made me suspect your problems with headaches could be from excessive vasoconstriction. You mention cold feet, tachycardia, headaches worse with standing and improvement of headaches and POTS symptoms from IV fluids. This sounds like vasospasms to me. --- I have Reynauds syndrome in my feet as well ( constantly cold feet ), have HPOTS ( caused by blood vessel constriction due to sympathetic overcompensation ) and have Prinzmetal angina - chest pain caused by sudden and severe vasospasms of the coronary arteries. I also have high BP from the HPOTS. The reason I find this relating to you is that many people with HPOTS also suffer from migraines, and these often are due to vasospasms as well. In my case it is coronary arteries that spasm - in your case it COULD be the vessels in the brain? In my case when my brain vessels constrict they do so very suddenly and severely and I have seizures from this. It could be that you suffer from just constantly constricted vessels, like you do with your feet. What has helped me a lot with the excessive constriction is calcium channel blockers, as they work by dilating the vessels. And i have a port and get IV fluids several times a week at home. The fact that you respond so good to IV fluids also points in the direction of excessive vasoconstriction. The IV's not only provide volume but they also create a steady pressure in the vascular system, therefore counteracting the ANS's urge to constrict. It is essentially like running water full force through a pinched hose - this can "unpinch" the hose. Have you ever tried calcium channel blockers? Also - what helped me was nitro glycerin patch, it also relaxes blood vessels but i had to stop it b/c it dropped my BP too low.
  3. I've had POTS since December 2011 and have had headaches every single second of every day since then. The location of the pain and intensity of the pain changes by the second. Sometimes they're unbearable, sometimes mild, sometimes the pain is super intense all day long. Like you I also have extremely cold feet. I wear very thick wool socks all year long. I do have tachycardia. At one time or another I've tried the drugs you have tried. And like you, nothing worked. I've tried migraines specific meds like amovig and nasal injections. As for exercising I can really only do a recumbent bike. My goal is usually 45 minutes, sometimes I can do that with little rest, sometimes I'm resting every 5 minutes. Sometimes I can't do more than 10. When I started on the recumbent I'd do 10 minutes, then moved to 15, and so on until I could 45 minutes with little to no rest. I don't exert myself too much. Oh and swimming I've found is really good. I have significantly less discomfort swimming than any other form of exercise. Wondering if your headaches are worse standing? If so, that might help explain why you feel worse exercising. My tend to be, so one theory was that I had a spinal fluid leak. several blood patches, MRIs, CT scans, and a MRI myelogram later, it was determined I do not have a leak. But a small spinal leak could be causing your issues. The only thing that has ever really helped was IV fluids. For the last 9 years I've been drinking as much water as I can and increasing my salt intake like crazy. The IV gave me several hours of relief (not 100% better, but I could function so much better). So if your local doctor can give you an IV of fluid (saline) that may help. It seems to get better each time so maybe see if you can do it 2-4 times within a months time. I've tried so many things, so if you have more questions feel free to ask.
  4. I drank 3 bottles of water. I will still be dehydrated tomorrow.
  5. I stand for long and I am soaking, I mean dripping, wet. My hair looks like I just came in from the rain. I just got back from the grocery store. Everything I wore is soaked, my makeup ran and my hair is still wet. I've been home for 3 hours. If you find a solution to this, please tell me. People look at me and ask me if I'm ok all the time.
  6. Yesterday
  7. Hey @Pistol. Thanks so much! I'll definitely try to see my doctor as soon as possible and see if I can get that checked out.
  8. @Jennie, I live in Texas about 5 hours away and I was just looking into POTS Care. I did find reviews on some blogs. I know it can cost up to 5K-10K if you have a budget for that, I know they donโ€™t accept insurance. I have heard they use Biofeedback ( Heartmath )and meditation. I am definitely one who is interested in a more wholistic approach but the cost and reviews made me very weary. Hopefully you can find someone on this website that has first had knowledge . These are the blogs I found when I was researching POTS Care Treatment Center. This is a past post and some blogs I found researching . https://lethargicsmiles.com/2013/11/24/its-not-all-sunshine-and-butterflies-the-negatives-of-mayo-clinic-and-the-pots-treatment-center/amp/ https://letsfeelbetter.com/the-pots-treatment-center-program-disclaimer-we-need-to-talk/ https://www.strongerthanpots.com/single-post/2018/02/07/The-Texas-POTS-Center-My-experience?_amp_ Hope this is a good start until you can find someone that received care there recently. ๐Ÿ˜ƒ
  9. Hello @Ed123 - welcome to the forum, and good job taking care of your POTS symptoms with the above mentioned treatments!!!! -- Yes, you CAN loose a lot of electrolytes when you sweat excessively, and sodium is only one of them. That is why it is important to replenish your electrolytes when you sweat - such as with sports drinks etc. You can see your doctor and he/she an easily check your electrolytes with a metabolic panel -a lab test that measures them. But if you are uncomfortable seeing your doctor you may be able to just call and ask to have them checked instead of going to the office. Often by replenishing them with mineral rich foods and liquids you can correct any imbalance, such as bananas, nuts, eggs, veggie broth, whole grains etc. But it is always a good idea to check with your PCP, even if by phone. Be well!!!!!
  10. Has anyone been to PotCare in TX? What kind of Pots did you get treated for and what symptoms? What was your experience? Did their protocol help you in any way?
  11. Has anyone had experience of an electrolyte/mineral deficiency? Particularly in response to a high salt and fluid diet to treat POTS. If so, what were your symptoms and how did you resolve the issue? In February I was diagnosed with POTS after 6 months of increasingly severe lightheadedness and orthostatic nausea amongst other symptoms. Luckily I had a lot of success treating my POTS with high salt/water/exercise to the point where I'm almost completely free of these symptoms. However, since about a week after beginning treatment for my POTS I developed completely new symptoms such as muscle twitches, leg cramps and digestive bloating. These issues have become more severe this summer, which may be related to increased sweating. I'm not on medication but I've heard things like high salt, water and sweating can all potentially lead to mineral deficiencies and was wondering if anyone else had experienced a deficiency, potentially as a result of pots treatment. I'm not seeking medical advice but want to see if anyone else has experienced this before altering my fluid/salt due to the hot summer weather, or before seeing a doctor which is difficult due to covid. Hope everyone's staying as healthy as they can. Dealing with a chronic illness is hard enough without a pandemic on top of everything. :-)
  12. My husband takes Verapamil, which is different than a beta blocker. If the high HR still happens despite the beta blocker I would have him return to a cardiologist to maybe try another type of medication
  13. Hi all, Wow, thanks so much all for your kind and thoughtful replies! Yes, I guess this isn't what my dad has - it isn't worse when standing up. Thank you especially Pistol, what you are describing with your husband sounds like the case for my dad! And yes, he does take a beta blocker (but I think sometimes it still happens) -- he has a lot of PTSD as well from other things, and I guess it's hard to tell when the racing heart is from anxiety and when it's an episode. Thanks for these helpful articles as well, I'm glad to learn more, maybe it will help othres at some point. Merci!
  14. Dear @merkat30 - I have HPOTS as well as NCS, and I suffer from BOTH high and low BP's. Does your BP increase when standing? That usually happens with HPOTS. With me it depends on which part of the ANS is dominant - sympathetic = high BP, parasympathetic = low BP. I am on high doses of beta blocker and calcium channel blocker to combat high BP but cannot tolerate decreasing it when BP is low. When you say your docs want to try a high BP tablet - do you mean a tablet to make your BP lower or a tablet to make it higher??? Is your BP low when you have HyperPOTS symptoms?
  15. Dear @merkat30 - I have HPOTS and do not have flushing when standing, but I know it is a common symptom of MCAD.
  16. I think this is me at moment is ketoifen like a steroid? Cause my hyper pots ten time worse at moment cause I been on trial of it for my mast cell activationn syndrome. Hope today is better day for u and u hugs from uk๐Ÿ’•
  17. I cant stand without flushing I have mast cell activationn syndrome is it of this or Hyperadrenergic dysautonomia?
  18. Anyone else suffer hyper side of pots and also have low blood pressure aswell doctors wanting try high bp tablet but last one ended me up in hospital so worried
  19. Hello @Lamby -i too have POTS and ADHD as well as histamine intolerance that triggers my POTS symptoms. I personally have found low-dose Ritalin in the morning very helpful and have not noticed an increase in allergic reactions from the super low dose. When I DO get seasonal allergies or insect bites ( which both trigger POTS for me ) I take Loratadine in the morning and low dose Ativan ( 0.5 mg ) at night ( rarely ). Melatonin has not done anything for me in the past. The Lorazepam does help a lot to calm me down when my adrenaline levels are through the roof and I do not have any adverse effects from it ( other than feeling tired the next day after taking it ). I also suffer from muscle spasms a lot from the excess adrenaline so a half tablet of Flexeril ( a muscle relaxer ) helps me go to sleep when I am very tense ( but I do not take them together ) and I do not medicate every night.
  20. Several years too late to this conversation but am finding it really interesting and helpful. I have EDS/POTS and a recent diagnosis for ADHD. I had been taking ad hoc Clonazepam (once or twice a week) for restless leg so that I could sleep. When I started taking a central nervous system stimulant for my ADHD, I stopped taking the Clonazepam... for about six weeks my POTS symptoms completely disappeared! 100%! Then they came back. I had always had an uneven histamine intolerance, but it was cumulative rather than an outright allergy to specific things, and symptoms were so inconsistent that I could treat them with antihistamines as needed.... unfortunately, I have now discovered that because histamine is a neurotransmitter, CNS stimulants increase histamine production in the body. So any positive effects I get from the stimulant are erased by the antihistamine! ๐Ÿ™„ a histamine overload plus an inability to break it down is now messing with my menstrual cycle. I have been taking Quercetin and DAO supplements to stabilise the mast cells and degrade excess histamine. Iโ€™m interested in Clonazepam, but worried about the long half life. I tried it last night (1mg) and slept wonderfully, but woke up a bit dizzy and Iโ€™m just waiting for the stimulant to work but I suspect that the dose may be less effective than usual. Has anyone seen similar effects with shorter acting benzos? Or using something like Melatonin?
  21. Mild HBOT (soft chamber) will be an experiment for me. Others have found it helpful but there is no real data yet. I belong to a Facebook group where patients with different diagnoses discuss their experiences with it. It is thought to improve immune function, help with inflammation, migraines, etc. Since it is an experiment for me, a friend is lending me their unit to try so that I can discover if it helps before laying out a considerable amount of money. I do feel better at high barometric pressure so I'm hoping that this is a good indication. Here is a link to a place that sells two different brands--both with good reputations. The price depends on the size of the unit. They make both lozenge shaped ones that you recline in and upright ones where you sit in a chair. Also, the manufacturers have a rent-to-buy program. We'll see, but at least it should not be harmful. Here is a place with lots of information: https://www.hyperbariccentral.com/
  22. Last week
  23. So sorry you experienced this set back. Setbacks are so frustrating and frightening. That is such a good point not to burden ourselves further with questioning why--especially "what should I have done differently". I agree that so much of the time the flare up or set back is not connected to anything we probably have control of.
  24. @Jessica_ - I have flown to Europe twice since having POTS. I find that as long as I get IV fluids right before, have wheelchair assistance during transit onto the plane and drink plenty of water during the flight, wear compression hose ( which I usually cannot use due to Raynauds disease but need for long flights ) and get up every hour or so I do fine. I even have been able to tolerate the jet lag!!!
  25. Yep, it is. that's why we don't want to do it. Accepting something makes us feel like it is the end of something, like giving up. But it really is NOT - it also means freedom. Freedom of being a victim. When we accept something we simply cannot change then we can start to live with it. It doesn't make it right or fair or better - just easier. Be well, @Nin!
  26. It's just ???? All the time. I'm always questioning why why why. Now I know we just don't have the answers most of the time....it is what it is. I tell myself "you just got to ride the storm" I just hate it when I know the storms coming. I try to stop things happening, but I also have get on with everyday life i.e cooking, cleaning. I was doing really good for about 2 weeks, cleaned the house and then felt rotten since. Acceptance really is hard to accept! But I suppose we got no choice. Keep going like you do!
  27. Klonopin is what i started on and now have weened off since i figured out my disease.
  28. I fly all the time! I take the clonazepam before the flight.
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