I have Cfs/m.e and pots but am going through investigations for a 3rd time due to having vertigo etc the past 6months. Any Tips on coping?

[Ponymad]

Very worried it’s untreatable. It took the Doctors years and years to find out I had pots in the past so suffered years of dizziness

[Starry]

I'm afraid i dont have any tips other tuan to move slowly. Can i ask what is POTS and how you got diagnosed? I have had just a subtle dizziness or disbalance for months. I took iron supplements but its continued. Ive had a fall leading to toe surgery and a minor car shunt and wondering what the cause is...

[Ponymad in reply to Starry]

I am very anxious as you can imagen because of the symptoms and everything I went through in the past which I know must not be helping the dizziness. Pots stands for postural othastatic tachycardiac syndrome which is when your blood pressure drops when you stand and heart rate goes up causing dizziness but the doctors don’t think it’s coming from that this time. Also have constant ringing in ears a blurry vision. I’m sorry to hear your suffering too. Have you been tested for pots? Are you under investigations at the moment too?

[Starry in reply to Ponymad]

I see a ME specialist GP tomorrow for diagnosis. But the dizziness could be lots of things and isnt being investigated. It was viral meningitis that triggered the ME and i have endometriosis. I've ruled out low iron as I'm on supplements so possibly vestibular or hormonal, I do tend to low BP and cold extremities so who knows....

I dont have tinnitis or vision issues. Perjaps worth trying to get a ENT consult in case vestibular physio can help?

There seems to be a lot of info on the POTS and STARs charity websites via the nhs page maybe you can find some more info there?

[Ponymad in reply to Starry]

I’ve been told by a neurologist I’ve got labryintitis and the only other thing is minese which is really rare but they probably will still rule that out. I’m so frustrated and scared because I’m not improving yet and it’s been a long time. I just prey when they give me the exercises they help. Good luck with the m.e specialist. I’m sorry you’ve got endometriosis too x

[Starry in reply to Ponymad]

Good luck with your tests, i really hope you get to the bottom of it. Hopefully my ENT appt will be the first step in a diagnosis for mine.

Yes the ME was confirmed at the appointment so i now have that diagnostic label

[Ponymad in reply to Starry]

Thankyou. I’m sorry you’ve got the diagnosis. It’s so disappointing to be told you have another illness but then it makes sense to why you feel ill. I got told twice I have it because I pretty much recovered and then got hit with it again, it’s a nasty illness but you just got to build up slowly, you will have set backs but when you learn how to manage them they get less frequent and you can live a fairly normal life again. Previous to this 6 months I wasn’t working but I was traveling around America and managing the symptoms really well with rest breaks, pretty much just ended up being the tiredness and no pain etc but this nasty stomach

Virus I got has completely knocked me for 6 so just hope I can build up again and get rid of this vertigo soon. Hope you feel better soon

[Starry in reply to Ponymad]

If you keep struggling i read of a fellow viral meningitis sufferee who got referred to a very specialist neuro otology clininc in london after complaints that initial diagnosis was wrong and she got worse so don't give up xx

[Ponymad in reply to Starry]

Oh really what did it turn out to be? X

[Starry in reply to Ponymad]

Shes still waiting for the appointment. But thought I would mention as may be worth checking out if you get stuck further down the line.

[cazzaleo]

Hi Ponymad

Sorry to hear you’re feeling so awful. I have CFS/ME and postural hypotension now, but years back I had vertigo for years and years so I really sympathise!! I was adamant mine was caused by something not being right in my neck, as the vertigo started a month or so after I fell and got whiplash but the Drs were adamant it wasn’t and over the years gave me a few different diagnoses and nothing they did helped. Then I slipped and kinda half fell, my foot jarred into the ground to stop me falling entirely and with that I felt a crunch in my neck - the vertigo completely disappeared after that! So it seems it was related to my neck after all!

Even if you don’t have anything that you think would make your neck the likely culprit is really recommend seeing an osteopath just in case!

Good luck with getting things sorted, I hope you feel much better very quickly x

[Ponymad in reply to cazzaleo]

Thankyou so much I will definitely try that if I don’t get a diagnosis soon. How do you deal with the m.e and pots? Previous to these last 6 months I was managing mine really well then got a stomach virus and gone downhill since. Just hope I can get some answers soon as it’s making me so miserable and so hard to distract myself when I can barley move. So glad you found your cause of vertigo and it’s gone now even if it did take so long and happen in such strange circumstances x

[cazzaleo in reply to Ponymad]

It was really strange circumstances that fixed it, I slipped on cat food!😂 I might get a few seconds of vertigo once or twice a year now but nothing compared to the almost constant vertigo I had for about 6 years.

As everybody always says, pacing is really important. I’m also trying a bunch of different supplements and more recently have been having hyperbaric oxygen therapy at my local MS centre which I think is helping. I think you just have to be extra kind to yourself, especially when you’ve got a bug, and only ever do about 50% of what you think you can do, minimising screen time and being careful about emotional and mental exertion as well as the physical side.

I’ve got postural hypotension rather than pots, I’m not sure if they both benefit from the same things, but I find mine is much better when my CFS/ME in general is better. I try to make sure I get a bit of salt every day, drink plenty of water and do counter measures before I stand up.

Are you being seen by a local CFS/ME clinic?x

[Ponymad in reply to cazzaleo]

I’m so glad you got better even if it was in a strange and funny way. I’ve just been diagnosed with labryintitis and very frustrated to have another diagnosis and scared as to why I haven’t got better. I’m no travel sickness tablets which I think help a tad but I have no confidence now and don’t even wanna bath myself alone incase I faint. I’m sorry you’ve got secondary illnesses too. Your right about being extra kind to yourself I don’t think I have been lately as I’ve just been so frustrated with my body x

[cazzaleo in reply to Ponymad]

I hope you get better soon! Labyrinthitis was the first diagnosis they gave me for the vertigo and of course they were wrong! GP also told me not to move if it made the vertigo worse, which of course it did, but as I later found out from an ENT consultant that was terrible advice!! Moving helps your brain to learn to make sense of the signals from your ears, eyes and body that relate to balance and so moving helps them learn to compensate and make you feel better.

When I eventually got to see ENT they gave me vestibular rehabilitation exercises to help lessen the vertigo, which was useful. You can look them up online.

If I doesn’t get better after a couple of weeks make sure you go back to the GP.

Do you get to see anyone at a local CFS/ME clinic?x

[Ponymad in reply to cazzaleo]

Thankyou for all your advice. How long did it take to see a difference with the exercises? I’m trying to move around more while also on these tablets and still feeling like I’m on a roller coster. Did you get ringing in the ears and blurry vision when you had vertigo can you remember? I might still try the osteopath though. No I have years ago though do you? X

[cazzaleo in reply to Ponymad]

I can’t remember how long it took I’m afraid, it was about 8-10 years ago 😬 It sucks that it makes you feel worse, but it is worth still moving. I didn’t have ringing in my ears but my vision was blurry where the room was moving all over the place!

Osteopath is definitely worth a go. Mine helps me now with a lot of the pain I have and does some lymphatic drainage (like the Perrin Technique) which is helpful for CFS/ME.

I do occasionally, they’ve had some useful advice for me, though obviously what they can do is limited x