A TREATABLE CAUSE TOO IMPORTANT TO MISS

[bombsh3ll]

2 hours ago, CarolS said:

I wonder if you've been able to give yourself any very prolonged periods of rest.

No - I came across POTS during the first few days of my illness when searching for things that could suddenly rob a healthy young woman of the ability to be upright & read all the advice to avoid prolonged recumbence, force yourself to be upright etc so no I have never lay flat for any period of time. That advice continued once I was formally diagnosed with POTS a couple of years in. I despised the insinuation that I needed to "recondition" - as if I would have gone from being able to run 5k no bother right up until I tried to inflate that thing, then too "deconditioned" to stand up seconds later" but I could see exercise being beneficial. 

Perhaps if I had discovered the real problem at that time things could have been very different. Even now I force myself to sit up on the couch all day as I see becoming completely bedridden as "the end", & also I think if it was going to heal spontaneously it probably would have done so in 5 years! 

Once I have my blood patch though, I will spend the first 24 hours lying completely flat, then at home I will be on rest for the first couple of weeks. This gives it the best chance to seal.

I always used to joke that I would never let my children play a wind instrument as it ruins your face plus I hate the din, (not that any of them are musical whatsoever) but now I definitely would not!

B xxx

[MeganMN]

Thanks for this amazing thread, @bombsh3ll  I hope that you can finally get the help that you need.  I have thought about this thread a bunch.  We have actually finally determined that I have a co-existing condition (Carcinoid Syndrome) but they have now actually decided that my POTS began as a result of a concussion!  I had a vasovagal event at work and hit the deck, slamming my head into the ground and ended up with a concussion, have had POTS ever since.  I wonder if I had a leak based on the postural headache and other symptoms that resolved as soon as I lay flat.  The headaches have gone away, the nausea is better, the fatigue and brain fog are better.  The tachycardia is now intermittent and seems to happen less and less.  It is crazy though, how it has been almost a year and no one really put all that together.  When I do the research, it is CLEAR that post-concussion syndrome can result in POTs and there is a clear, proven link between the two, yet it is something that no one mentioned until I saw an Osteopathic doctor who said that maybe the POTS did not cause the fainting, but the fainting caused the POTS.  I never had any of this before I passed out and hit my head!  Thanks so much for the update and the info!

Meg

[Yhoun]

I am so glad that you got answers, bombsh3ll. Hoping for effective treatment and swift healing! 

 

[bombsh3ll]

@MeganMN Thanks for your reply, I am glad you are doing better and getting to the bottom of your problems also. It does concern me the number of people who are completely well until they have a concussion or similar injury & cannot be upright immediately thereafter, & acquire a POTS diagnosis without consideration of a CSF leak. 

I am glad dysautonomia awareness is increasing & that there is so much information online now about POTS, but in a way I feel this was detrimental in my case as with no healthcare provider interested in why a previously healthy woman suddenly could not stand up after one specific event, I was left to hunt down the diagnosis myself, & unfortunately came upon POTS five whole years before I discovered there actually was a recognized mechanism for a forceful valsalva in a person with a connective tissue disorder, to immediately destroy a life like that with my exact symptom complex.

When I pushed to see an autonomic specialist I was formally diagnosed with POTS based on a modest HR increase, but nobody could explain how a forceful valsalva could cause that, or the splitting orthostatic headaches, or why no medications typically used in POTS ever helped me. 

Acquiring an untreatable diagnosis therefore led me to stop going to the hospital & demanding answers, whereas I think I would have done had I never come across POTS. It is so easy with hindsight, however I do believe that the emergency physicians & certainly the neurologists that I have seen should have suspected a CSF leak based on my classic presentation, clear inciting event plus connective tissue disorder & am considering a malpractice claim against the NHS trust. 

On 10/7/2019 at 11:44 AM, FileTrekker said:

Why do you have to fight for NHS funding? This is how ridiculous the NHS is.

Also what was the diagnostic test that proved a CSF leak?

I have to fight for "out of area" funding as I live in Scotland where the NHS only automatically pays for treatment within your local health board, and there is not a specialist team that treats my condition where I live. Not only does this delay joining the waiting list for treatment if successful, but may not be successful if they decide I should be treated by somebody within my health board who lacks specific experience in patching spontaneous leaks at an unknown spinal level in connective tissue disorder patients. 

We are looking into paying for at least the first blood patch privately and/or registering at my mum's address in England, where patients are free to travel to see an appropriate specialist within the NHS, even if it is not their local area. 

The test I had was MRI whole brain and spine with gadolinium contrast, done in March or April of this year. This picks up 70-80% of leaks. Mine was initially read negative by an NHS hospital in Glasgow, & there the trail stopped, until I sent the same scan to one of the world's top neurosurgeons in the US Dr P Bolognese, to be screened for craniocervical instability. Without me mentioning my suspicion of a CSF leak or that my illness was valsalva induced, he wrote back that it was suggestive of a CSF leak & that I should be further evaluated for this. I then went private to see a UK specialist in CSF leaks & was diagnosed. To anyone who knows of the condition, mine is a barn door diagnosis, but sadly even as a GP myself I was not aware of this rare condition until I watched Dr Carroll's video, so was not in a position earlier in my journey to advocate for the correct test. 

@Yhoun thanks for your kind wishes, I hope things are going well with you. I know my story will not apply to very many on here other than as a message to never give up in trying to find the cause of your illness if reasonable avenues remain unexplored, however in a very short time of starting to participate in CSF leak forums I have discovered it is not uncommon for (particularly female) patients to be told they have POTS prior to their diagnosis of a CSF leak, so I am certain there will be others visiting this site who would benefit from knowing about this. I wish I had. 

B xxx

[racingheart77]

Thank you for this post. I also have had a csf leak. I'm sure I had it as I remember the pain laying down. I Al's remember the feeling of what seemed to be cold liquid rush down my spine. Yet the mri came back negative and the doctor was very condescending with me saying it's just anxiety. I may take your advice and send my mri to the doctor you listed. Thank you. 

[sue1234]

@bombsh3ll  What's the latest with you?  Did you find more help?

After reading this whole thread, I personally think POTS is only a symptom of another underlying cause.  It is similar to having a fever, as it is just a consequence of something else going on.  I will continue to look for the root cause after it POTS came on suddenly 14 years ago.