Jump to content

POTSius

Members
  • Posts

    89
  • Joined

  • Last visited

Everything posted by POTSius

  1. Like you I have hyper pots and achy muscles. Some thoughts I have 1: your eyes are controlled/assisted by all sorts of muscles. Given your other muscles are achy, it makes sense that these ones could be too. Maybe this relates to some of your problems. I imagine if these muscles are achy it is due to eye strain (see point 3 below). 2: you may have dry eyes. I have found this increases eye strain and makes my eyes achy, probably because I have to slightly squint while reading when my eyes are dry. Optive refresh eye drops did the trick. It takes practice putting them in right. The first time I put them in wrong and it made my vision seem worse, so I am glad I persisted. 3. Learn what causes eye strain. I find it easier to read with a narrower page column, increased line spacing (1.6), increased font size and an easier to read font (Verdana works nicely for me).
  2. The recumbent bike could be good if you have dysautonomia, at least to get started. I don't know whether you can do that with your condition or not.
  3. I have been diagnosed with pachychoroid. Basically the layers under my retina are thicker than normal and it is causing little "bubbles" under the retina and vision issues. This has led to having difficulty reading normal sized print so I read digitally and increase the font size. Often I look at all the ways my body is misbehaving as connected but I think this may be one of those cases where it just is completely separate from POTS. Anyone else have any experience/insights into this? I think such issues are more common in older people and the doctor seemed puzzled by it in someone my age. They said the nasal steroid I was taking for allergies can cause this in some people (not to scare anyone!)
  4. One possibility is that it is not the ibuprofen but some inert ingredient Also you may just be allergic to the medicine itself, which is not uncommon with NSAIDs https://www.mayoclinic.org/diseases-conditions/drug-allergy/expert-answers/aspirin-allergy/faq-20058225 Clearly if it is an allergy, you will want to be careful I personally have found ibuprofen very helpful, but can't tolerate aspirin
  5. That is an interesting theory re the viruses I am not very familiar with the science on that, but wouldn't that be something that should also cause winter flares? I guess I wonder how well the fall flare pattern fits with the virus pattern which I would imagine is worse in the winter.
  6. I can very much relate re the fall flare ups They are quite a mystery, the best explanation I can think of is seasonal allergies somehow interacting with my MCAS. Here is a poll I made a few years ago re the same
  7. I am making this post to share the things I have found helpful dealing with my illness over the last few years. The information will be sorted by symptom into categories. I plan to update this regularly, so stay tuned. I have also added some miscellaneous thoughts/things I have learned. This should not be taken as medical advice, but rather things that helped me and which you could consult your doctor about if it inspired you in some way. Fatigue + Malaise - Ibuprofen Insomnia- orange glasses to block blue light at night 2h before bed - Light therapy lamp (the type used for SAD), first thing in AM (to set circadian rhythm)- oral cromolyn (this was surprising and very helpful)- ibuprofen- keeping room cool at night (near 60F!)- Benadryl in flares as needed. Seems to work best if I try to sleep naturally and only take it if I can't fall asleep. Chest pains: - Acid reflux management (which helped more than just the reflux but also chest pain, possibly as the reflux was irritating my esophagus). I particularly manage this with baking soda and pepcid (10mg spread 4 times throughout the day). - Avoiding overly hot or cold foods (to test: hold in mouth for a few seconds, is it too hot? cold?) - Avoiding sharp foods (fried food) which seem to irritate esophagus Lower gastrointestinal symptoms - An electric heating pad applied to my stomach at low heat is very helpful to deal with the pain at least - Identifying foods that triggered symptoms and avoiding (+ allergy testing, etc) Eye blurriness when reading: - Optive refresh lubricant eye drops (I would not have even guessed my eyes were dry before trying these) Exercise: - I found it very helpful to start any exercise at a ridiculously low level and then increase at a slow rate as tolerated. e.g. I started using a recumbent bike at 2m a day! An advantage of this method is that, if you start feeling worse as you increase, you can always return to the last "safe" level rather than stopping exercise outright. As long as you never/rarely go backwards, increasing at a slow rate will eventually work. Muscle Shaking: - Electric heat pad (don't know why this works) Hot red hands, feet, ears: This symptom typically only starts in the evening, it seems to correspond to the fact that before the evening my hands, feet and ears are very cold - The hot red hands, feet and ears tend to worsen if my hands/feet/ears get overly cold in the first half of the day: so I try to avoid that. - Avoiding heat later in the day helps - Resting after meals Miscellaneous Thoughts: Medicine/Supplement inactive ingredients I have found that some medicines that were helpful I almost did not take given a bad experience caused by inactive ingredients in the medicine. For instance, when I first tried propranolol I got bad GI symptoms but with a different manufacturer I was fine (the issue was lactose. I have learned that even the small amount of lactose contained in some medicines can be a major problem for me). Time to adjust Several helpful medicines made me feel worse at first and only after giving them some time did I realize their usefulness. Clearly, however, this is not always the case. Gradual dosing I have found it helpful when starting medicines to start at a very small dose and gradually ramp up to the target dose. Sometimes this involves splitting the pill (unfortunately this should not be done to not all medicines, so check with dr/pharmacy).
  8. I have had issues with my eyes getting blurry after reading for prolonged periods of time. It turns out, my eyes were getting dry and refresh optive eye drops have worked great. The first time I tried it just seemed to make my vision more blurry, but I have since learned you have to know how to put them in properly/how many drops to use. Hope this helps someone
  9. I can relate and have found ibuprofen to help enormously
  10. @LizS I experience this Like @Pistol, I also have mostly constriction, and I get this typically due to heat. The hot red extremities with swollen veins is typically worst for me later in day, say after 6-7pm. I get it in my hands, feet and ears An interesting pattern I have noticed: it seems maybe the worse the constriction is during the day, the greater the potential for the dilation at night. I wonder if it would not be a problem if somehow the constriction during the day were controlled. Like @MTRJ75, this also seems somewhat familial for me but mine is much worse than the others (who do not have POTS)
  11. In December, I posted about the tremendous benefit I recieved to one of my worst symptoms, chest pain, through self massage of the chest. 4 months later, I wanted to post an update that the improvements to the chest pain have maintained and are perhaps even better than in December I have also found a great benefit in massaging other areas. I have had success with some symptoms of orthostatic intolerance ("scalp tingling," funny head feelings) via massaging the muscles of the head and leg shaking via massaging various muscles on the legs. This has probably been one of the best treatments I have found in terms of benefit and of course cost/side effects! As far as my method, I search for sore areas on the muscle and then massage these areas only for just a few seconds at a time, but like a dozen times a day. Results seem to take days to weeks. I have found that it helps to experiment putting the target muscles in different positions until finding the best positioning in which to massage. For example I found I had to open my jaw fairly wide and let it relax to massage one spot near my ears. I often don't even notice the muscles are sore until I try to massage, which is why it took so long to figure this out. I.e. my legs felt shaky but not that achey. Since others don't seem to have had such a profound response to massage, I wonder if I just have some abnormal pathophysiology behind my illness. Anyway, I hope this helps someone. As a disclaimer I have no expertise in this area and am just sharing my experiences. Massage can probably be dangerous if done wrong? So exercise caution
  12. My experiences with eye achiness and head muscle achiness is quite similar. Quite debilitating symptoms. For the head achiness, I have found self-massaging the achey muscles has helped tremendously. Multiple times a day, but massaging each place only 10 seconds or so. In my experience this takes some time to work, days to weeks. Specifically all over the temporalis, frontalis, occipitalis, even some muscles in area right behind ears. This is just my experience though. I find the eye achiness gets worse with allergies. I find reading small print is particularly bad, and I have my browser, etc configured so everything is large print, which helps a fair amount.
  13. Maybe it is the sternocleidomastoid muscle When you say under your jaw, do you mean at the side of your head? or more towards where the adams apple is located. Sternocleidomastoid I think runs more to the side. I have had possibly similar issues. Massaging it helps me, but you want to be careful as there is a lot of "stuff" around there like blood vessels.
  14. I find heating my core, with an electric heat pad, helps (even though it is my legs that are often shaking) (I don't feel cold, but the heat still helps) Also, I find that the muscles that are shaking are often quite sore and if I massage them the shaking improves. The massaging can take a bit of time to work. Also it seems to need repetition. So I might massage 15seconds, and 5m later do the same, etc etc.
  15. I would love to know more about less common treatments. Maybe things that work really really well but for a minority of patients.
  16. For me muscular overuse triggers symptoms, so I only massage like 30 seconds at a time as the massaging itself can be quite straining, but I do it a lot over the course of the day, like a dozen times or so. That actually seems to work! I don't know the specifics of your other health problems but maybe that is helpful info
  17. @POTSAly Are you 100% sure it is pressure inside your head? Maybe it is muscle tension in the muscles around your head and neck? I used to get bad headaches until I started to massage my temples, as I describe in the following post.
  18. I have tried prazosin (an alpha 1 blocker) It helped with my normally very cold hands and I think I felt a little better overall But I had worse GI symptoms and fatigue (maybe due to the GI symptoms?) Another thing to note is that, at least for me, when I discontinued the prazosin I had some mild "withdrawal" effects, or maybe just a coincidental flare up in symptoms.
  19. Here is a study that supports the use of oral rehydration solution (ORS) in POTS https://pubmed.ncbi.nlm.nih.gov/31405524/
  20. @Sarah Tee That is great that this is helping You should look into oral rehydration solutions, you can buy or make They have water and salt but also sugar and other stuff to help it be even better absorbed, or something like that. Maybe it would help more?
  21. @dancer65 Thanks for all the advice. I am young so I think that must be it. Good to know it is something that might tighten later. Can definitely feel that last stretch for the neck!
  22. @dancer65 Thanks for the advice, I looked up False Cardialgia and it sounded like an interesting idea. As I noted above, it really did feel like the pain was heart palpitations. I tried the stretch and I found a lot of soreness in whatever muscles pull the shoulder blades together, maybe that is what I need to work on next. I will have to try further for the pecs, as I could not get a stretch feeling there doing this.
  23. I get something similar when in a particularly bad flare up I find heating my core helps (even though it is my legs that are often shaking) I use an electric heat pad I also don't feel cold, but the heat still helps I find that the muscles that are shaking are sore and if I massage them the shaking improves
  24. Thanks @Pistol I am extra happy as it did not involve adding yet another med!
×
×
  • Create New...