• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. 2Cor.12:9

    Experiences with sleep apnea treatment amd ME/CFS

    Hi @perchance dreamer - I started out with nasal pillows thinking they would be much easier to get used to but I just couldn't handle it. My DME tech said most of his patients preferred the full mask so I switched. The mask has been so much better and gives me the freedom to talk! ha! It...
  2. 2Cor.12:9

    Pulmonary Hypertension caused by Sleep Apnea

    Sorry @TiredBill I just saw this. My numbers range anywhere from .04 - 2.10 - but usually around 1 ish. I have a mix of centrals and ob that seesaw. My pulmonologist is happy. I had my echo follow-up and the pulmonary hypertension is still there - but the dr isn't worried about it...
  3. 2Cor.12:9

    Pulmonary Hypertension caused by Sleep Apnea

    UPDATE: Well folks, I'm 6 weeks in with the CPAP machine and all I can say is WOW!!!!! No, my ME/CFS hasn't magically been cured. But YES, my brain fog has vanished! It's like I've been semi-comatose for.ev.er. I can think clearly and can read and write again. My legs don't...
  4. 2Cor.12:9

    Comorbidity with Sleep Apnea

    I have mixed apnea: central and osa, and have just started using an APAP. So far it has brought both apneas down to almost nothing, so hopefully I will be able to continue using the APAP. Depending on the cause of the central sleep apnea, some CA's can be successfully treated with the...
  5. 2Cor.12:9

    Did your spouse or partner also get sick when you did, but recovered?

    That's an interesting story @Runner5 - I know what you mean about the fatigue. They really need a better term for it - like cellsmadeoflead or something. Thx for sharing.
  6. 2Cor.12:9

    Did your spouse or partner also get sick when you did, but recovered?

    Hello. Can someone please help me out with this ? I'm curious as to how many ME/CFS patients had a spouse or significant other (non blood related) who got pretty sick with a virus or toxin when when they did, only completely recovered. Thank you!
  7. 2Cor.12:9

    I am having the best day...

    Yep. ha! That's my middle name.
  8. 2Cor.12:9

    I am having the best day...

    @TiredBill - perchance are you Spy Car?
  9. 2Cor.12:9

    Pulmonary Hypertension caused by Sleep Apnea

    Thanks @Gingergrrl :)
  10. 2Cor.12:9

    Pulmonary Hypertension caused by Sleep Apnea

    That's sure encouraging! Thank you!
  11. 2Cor.12:9

    Pulmonary Hypertension caused by Sleep Apnea

    Thank you - that's good to know. I haven't been fitted yet and was planning to ask if the nasal pillow would work for me.
  12. 2Cor.12:9

    Pulmonary Hypertension caused by Sleep Apnea

    Hello friends. I originally posted about this here http://forums.phoenixrising.me/index.php?threads/pulmonary-hypertension-hypoxia-rhinitis.58582/ , but since I'm not able to edit that post I'll update it here. So, after 32 yrs living with moderate to severe ME/CFS, my new pulmonologist was...
  13. 2Cor.12:9

    I am having the best day...

    @TiredBill - Gosh, I want to apologize if I sounded cavalier. I've read that some people just cannot tolerate cytomel - even name brand and some will opt for Armour or another natural T replacement. Being more tired is even listed as a rare side effect on Web MD. I hope your doc can...
  14. 2Cor.12:9

    I am having the best day...

    This illness has a mind of its own and sometimes there just doesn't seem to be an answer for our crashes. Maybe it had nothing at all to do with the Cytomel. Maybe your adrenal function is okay. Who knows? It's spring time and maybe it's something in the air? Or maybe you overdid it when...
  15. 2Cor.12:9

    Low T3 and Normal TSH? Not hypothyroidism?

    Awww, if only finding the cause of ME/CFS were that simple. Many of us have low thyroid and though thyroid replacement is an important part of our treatment, unfortunately it's not the cure for ME. Having said that, if you spend any time on popular thyroid forums you'll also find thyroid...
  16. 2Cor.12:9

    I am having the best day...

    @TiredBill - So sorry about all the trouble you're having. Some people do feel worse at first for various reasons. Did you happen to decrease the T4 when you added the T3? That can make you crash (it did me, until I bumped my Synthroid back up) Also, are you taking your meds at least an...
  17. 2Cor.12:9

    I am having the best day...

    @TiredBill - Thanks for the machine info. So sorry about the thyroid meds not working out yet - it takes a lot of patience too. Took me years to get the right doses dialed in - and I still have to up them once in awhile. I take Synthroid and Cytomel (important to be name brand only on...
  18. 2Cor.12:9

    I am having the best day...

    @TiredBill Thanks for all the advice! I'm starting with just a home sleep study-my pulmonolgist is pretty sharp though and said he would have to do some guesswork with the home study. I wouldn't be surprised if I have mixed - eesh - sometimes I "forget to breath" when I'm awake! Of...
  19. 2Cor.12:9

    I am having the best day...

    So happy to hear this @TiredBill ! - I'm just now in process of trying to get a firm dx of SA - with a home sleep study to be done in 2 weeks. I'm in my 32 yr of ME/CFS. Like you, I've had better years where I could actually do some gardening. But the past 3 years I've been in the worse...
  20. 2Cor.12:9

    Experiences with sleep apnea treatment amd ME/CFS

    Hi @perchance dreamer & @CFS_for_19_years @TiredBill - I really appreciate this thread as I'm about to have a home sleep study because my pulmonolgist feels certain I have sleep apnea. All the comments here have been extremely helpful. I've already had an overnight home oxygen test and am...
  21. 2Cor.12:9

    Exploding Head Syndrome (!)

    @Cort - Arghhh...... I had this for awhile when I first got sick 32 yrs ago. Only recently learned what it was. It totally freaked me out- Sounded like a bomb exploding inside my head while I was sleeping. I thought I had a ruptured aneurysm or something - but then I guess I woulda been...
  22. 2Cor.12:9

    Pulmonary Hypertension > Hypoxia > Rhinitis?

    Hi all. Has anyone else had this experience? I was dx'd with Pulmonary Hypertension recently after having an echocardiogram for my more than usual heart palps. Since PH is a very serious disease and can be either primary or secondary to another condition, it's been a mad dash to see the...
  23. 2Cor.12:9

    Does anyone here have Pulmonary Hypertension by any chance?

    @rosie26 and @Gingergrrl - thought I'd give an update - My cardio did an overnight oxygen test, which came out low (hypoxia), so she put me on an oxygen concentrator at night. She ordered a lung CT scan which showed small nodules and bronchilolitis (which smokers get, but I don't smoke)...
  24. 2Cor.12:9

    Low Dose Naltrexone and BP?

    I'm on LDN and was on valtrex. I had to stop the valtrex because it made my heart palpitations worse and also raised my blood pressure. No problem with LDN - but I only need to take 1 mg though.
  25. 2Cor.12:9

    Does anyone here have Pulmonary Hypertension by any chance?

    No, probably because she needs to find out the cause first, if possible.
  26. 2Cor.12:9

    Does anyone here have Pulmonary Hypertension by any chance?

    @rosie26, @Gingergrrl - I saw the cardiologist who confirmed mild pulmonary hypertension. She explained that it is NOT the same disease as PAH (pulmonary artrial hypertension) which @roller mentioned. Also, even though the conclusion on my report said there was a problem with my...
  27. 2Cor.12:9

    Anyone get high blood pressure on Valtrex?

    @toolongtotell - There are websites that say high blood pressure with valtrex can be a rare side effect - like Webmd for instance. https://www.webmd.com/drugs/2/drug-14126/valtrex-oral/details/list-sideeffects I stopped taking it and also stopped the Alieve due to palpitations and blood...
  28. 2Cor.12:9

    Heart issues - do you experience this?

    Thanks :) - I'll be holding a good thought for you too! Even CHF patients can live long and do well. I had a friend who lived with it for many decades - died in her late 90's of old age. :) No, I haven't even seen the dr yet. I got the echo results and my chronic care nurse confirmed...
  29. 2Cor.12:9

    Heart issues - do you experience this?

    @TenousGrip Thank you. Have they been able to determine the cause for you? A treatment plan? There are so many things that can cause this - I have no idea yet what it will be for me. I'm trying to stay away from Dr. Google - already scared myself sufficiently enough - a little knowledge...
  30. 2Cor.12:9

    Heart issues - do you experience this?

    I'll be seeing the new cardiologist next week - my echo shows mild pulmonary hypertension (which is scary) and a also problem with the left side of my heart. @Binkie4 - I noticed on another thread re: antivirals you are on them too. I had to quit after 4 months as the side effects were...