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    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.

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  1. Mariah

    Tracking CCI / AAI MRI & Treatment outcomes

    I agree @bombsh3ll. I did not send the scans first though, as I have them downloaded digitally atm and not on a disc, I only e-mailed to ask how to go about getting an opinion from him. I was unsure which of the two doctors that does distance consultations to choose, but chose him as he seemed...
  2. Mariah

    Tracking CCI / AAI MRI & Treatment outcomes

    That is very helpful @hezza , thanks for the input! :) I`ve googled a bit and found a place with PTs and chiropractors in the neighbouring city who lists traction as one of their methods. I`ll communicate via mail to confirm. I have friends I can stay with while there, so the whole thing will...
  3. Mariah

    Tracking CCI / AAI MRI & Treatment outcomes

    Don`t know quite where to put this, but seeing if anyone has any input for me here. After reading up on these different neck issues and their co-morbidity with ME, and recognising alot of the symptoms associated, I decided to contact dr. bolognese to ask him how to go about recieving an opinion...
  4. Mariah

    Difficulty breathing + feeling of "lump" in throat

    Hi @Mariesak , I do experience relief off and on. Part of it undoubtedly is because I get used to, and forget, it and part of it because it fluctuates. For me it is not cobblestone throat, I have been checked at the ENT a few times. I believe it is neuro-muscular in origin at has to do with the...
  5. Mariah

    Difficulty breathing + feeling of "lump" in throat

    Good summation @Belgiangirl ! Mine is definitely not related to heart rate, the globus feeling has nothing to do with that. I also take beta blockers and I do not have fast breathing. Feeling a bit better with the globus atm., not struggling to breathe as much, but the feeling of a lump in my...
  6. Mariah

    Difficulty breathing + feeling of "lump" in throat

    @daisybell Thank you! :-) I'll write it down as my foggy head tends to forget ;-). That would be super ideal! But I've found one of the hardest things in the health care system is getting different specialists to actually communicate with each other. But I'm allowed to hope they actually will ;-).
  7. Mariah

    Difficulty breathing + feeling of "lump" in throat

    Thank you for your input @daisybell , I believe it was you that tipped me off to the paradoxical vocal cord diagnosis :). I've read and researched a bit more about it, and as I did, I got the impression that this was a diagnosis with more of an episodic symptom display, whilst mine are constant...
  8. Mariah

    Difficulty breathing + feeling of "lump" in throat

    @ArunP Have to admit I have never heard of a movement disorder specialist. I will ask my ME doctor about this also. The great neurologist I know of does botox, but from what I read, here, a knowledgeable ENT also should be able to do this. But finding one that is willing to try will be the...
  9. Mariah

    Difficulty breathing + feeling of "lump" in throat

    @ArunP I have read a lot about globus lately and what causes it and find that some do get help and suggestions, but it's the matter of finding the right ENT who will help you and also recognizes ME AND believe you when you say it is not caused by anxiety. Not easy. It's the ENTs who are supposed...
  10. Mariah

    Difficulty breathing + feeling of "lump" in throat

    Wondering if botox injections could work if this indeed is a neuro-muscular thing with the muscles not working properly/not opening and closing when they should. I've read a lot about this globus phenomenon lately, and botox always seems to come up with the muscular reasons. Also wondering if my...
  11. Mariah

    Difficulty breathing + feeling of "lump" in throat

    @ArunP When I was at my highest dosage, I took 0,5 mg clonazepam in the morning, and 1,5 mg at night. I`m down to 0,5 mg in the morning and 0,5 mg at night now, cutting down by just 1/8 of a tablet every week. So far it has worked great and not given me any withdrawal symptoms. I worked my way...
  12. Mariah

    Difficulty breathing + feeling of "lump" in throat

    Thanks for your answer @ArunP ! Haven't been able to find anything that clears this "lump/tightness" thing for me, and it is driving me absolutely insane and making my life miserable. Thankfully, it is better than a week ago, but far from good. I do believe mine is mostly, or maybe all...
  13. Mariah

    Difficulty breathing + feeling of "lump" in throat

    Quite sure I don`t have an infection @lansbergen. I think this is just a prominent symptom of my ME, whatever "ME" is. I think mine is autoimmune, but I guess we will know in time. Glad to hear you are feeling that much better! :)
  14. Mariah

    Difficulty breathing + feeling of "lump" in throat

    Having a bad spell of this lump/tightness feeling in my throat and difficulty breathing again now, complete with some air hunger and the need to hyperventilate a lot. Trying to breathe with my stomach which helps some. Hard getting to sleep when you are concentrating on breathing and at times...
  15. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @SueJohnPat Does the exact opposite for me. Makes me much more sleepy and I sleep longer and fall asleep as soon as my head hits the pillow. But in the beginning of taking Tramadol I experienced what you describe there, problems falling asleep, waking up many times and so on. But this was a side...
  16. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Thanks @nokmax76 ! I also have some symptoms that vary a lot, like pain and level of exhaustion. But generally, my disease is declining year by year, even week by week sometimes. And it`s really disheartening that the worst symptoms that are hardest to live with, like vertigo and visual...
  17. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @nokmax76 Thanks for the input! Do you mind telling me what pwc stands for? Seems to have escaped me. I really don't want to go off Tramadol as it works so incredibly well for at whole host of symptoms. But this effect on the vertigo is really taking it's toll, and is so extreme now that it is...
  18. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    I`ve noticed lately that allthough Tramadol is great for many of my symptoms, it affects my vertigo and my visual disturbances negatively. I have had chronic nautical vertigo (like Laura Hillenbrand) and chronic visual snow and "flies" in the visual field since the day I got sick. I also see a...
  19. Mariah

    Cyclophosphamide in ME/CFS Part A:an Open Label Phase-II Study With Six Intravenous Cyclophosphamide

    My friend did use a chemo cap and still had a substantial amount of hair loss. However, she did not loose all of her hair and in pictures I`ve seen from her you can`t really tell that there is much loss at all apart from a thinning of the hair and some spots have less hair than others. Would...
  20. Mariah

    New Mella talk, exciting reveals

    Did they say anything about whether the maintenance infusions increase your chance of an overall response at all or if they are just there to maintain a response (and possibly make the response better) @Marky90 ? My doctor has told me that the extra maintenance infusions don`t increase your...
  21. Mariah

    New Mella talk, exciting reveals

    I do hope they keep researching different treatments for people not responding to either Rituxan or Cyclo, so that we can all get better from this. Interesting talk nevertheless.
  22. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Understand @flybro. I will have to change it because at the rate that I am taking it now, one pack of Tramadol á 100 pills only lasts about 14-20 days. Tired of asking for new prescriptions all the time.
  23. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @flybro If you take this many (which I do too every day now), have you considered changing to the longer acting ones with a little higher dose each (they come in 100 mg, 150 mg and 200 mg)? This is what I'll ask my doctor about next appointment, I've spoken with a couple of people who say they...
  24. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Wow, that is an insult to sick people. That it would cost you anything to go to the ER, or that an insurance company would decide on whether you have to pay for that or not, sounds horrendous to me, I understand your rant, hehe. That must take a hell of a lot of energy arguing and appealing. I`m...
  25. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @Gingergrrl That sounds very stressfull in addition to everything else. Here, if the doctor feels that you need a medication, he writes a so called "blue" prescription. The doctor decides this alone. You pay a small fee every time you buy a medication with a blue prescription. When you have...
  26. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @hellytheelephant Thanks for the advice, but still think I`m gonna try it! I have excruciating pain every day now, and need some stable pain relief medication. I`ve talked with a couple of people who manage fine on this regimen. I do know about the dangers and the side effects, but those are...
  27. Mariah

    Cyclophosphamide in ME/CFS Part A:an Open Label Phase-II Study With Six Intravenous Cyclophosphamide

    I would disagree strongly, but that`s fine.
  28. Mariah

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Don`t have the cognitive energy to read all of this, but I get this relief from Tramadol which is just an opiate-like substance. It lasts for about a day after I`ve taken it too. I`m gonna see my GP in a week and ask for a longer-acting version of this to take every day as it also helps alot...
  29. Mariah

    Cyclophosphamide in ME/CFS Part A:an Open Label Phase-II Study With Six Intravenous Cyclophosphamide

    This is a study without a placebo group. They all know they are getting the cyclo, and their last infusion was in january. Any side effects will already have come. Of course I know the placebo effect still comes a little in to play, but a lot less. And I'm pretty sure none of the patients hang...
  30. Mariah

    Cyclophosphamide in ME/CFS Part A:an Open Label Phase-II Study With Six Intravenous Cyclophosphamide

    I think it would be OK since it`s an open study and doubt any of the participants are in this forum @John Mac. And if they are actually presenting data this fall we will soon know more in detail anyways. But I understand your reservation.