Can someone please give me some input. What are these symptoms?

[kinshealth]

Hi all! I'm a 30 year old mom and 2 and 1 on the way. I have been struffling with sudden onset of odd symptoms since June of last year. It began 2 weeks of intense pressure headaches prior to this I was experiencing some big stressors. CT and MRI showed perfect brain. I then began having a hard time sleeping beause of adrenaline surges, fatigue, severe hair loss, falling asleep but would keep waking becuae I would feel like I couldn't breath every time I would fall asleep. I would be super weak during the days and began having tachycardia here and there. This all lastest for weeks and weeks. I was seen by 3 cardiologists, lung specialist, and 3 docs. No one could find anything besides hypothyroid and low adrenals.
After a couple months of these horrible symptoms and not sleeping they gradually disappeared for about a month. With any stressful event I would crash with tachycardia, palpatations, shortenss of breath, arm weakness. I would slowly get better with rest. I've had about 4 of these crashes that last about a week each time. I'm unable to do anything. I was told maybe POTS in the Er on one time. Since this has started I cannot tolerate stress of any kind without my body freaking out. On bad days I cannot lift my daughter into her car seat becuase My arms are so weak and will elevate my heart rate. I can't exert myself in the least bit. I have good days and bad days but have palpatations more than not. They become so uncomfortable that I cannot sleep some nights. It's very uncomfortable and very scary. Now I have seen a mold specialist who checked some mold biomarkers that came back out of range one was VEG-F. I also had 5 viruses that showed up. She also diagnosed me with CFS.

Im curious do these sound like mold issues? What could suddenly cause all these symptoms to come on like this? I have not felt normal since last june and it's so scary. I have days where I feel like i might die and I hate saying that I'm scared and not sure If I have any solid answers and have spent so much money and time trying to figure this out. Not sure where to go from here.

Any input is GREATLY appreciated!

J

 

[Tristen]

Hi Kinshealth, your anxiety over what is going wrong with your body is something everyone here is all too familiar with. Plenty of empathy and helpful people here....so I'm sure you will get some good feedback. Just what's comes to my mind for now:

People more qualified than myself around here sure to comment on mold toxicity. I don't know about mold exposure hitting that hard early on. But then my niece got really sick in a house with mold. I'm just not sure how long they had been exposed before learning that to be the problem. She did say her and the kids were all losing their hair, in addition to being quite ill. They all made dramatic recoveries just changing the environment.

Almost all of your symptoms are common for PwME.....especially true with how stress precipitates your crashes. But then me/cfs is not the only thing that can cause this. One difference with this symptom belonging to me/cfs vs most other illnesses with this symptom, is that our crashes are often delayed, sometimes a day later. Not always the case, but it can narrow the diagnostic differential. Sleep problems, as well as POTS are also common for us.

Adrenal insufficiency, or Addisons can cause some of those symptoms. I would have more testing on this. I would also get a sleep study....one that includes Upper Airway Resistance Syndrome. Also, the viral infections they turned up may need more attention. I'm glad you saw the cardiologists. If they were thorough, that could at least rule out cardiac issues as being anything primary....and that would take a load off your mind.

Obviously early diagnosis is very important with any problem, especially true with me/cfs since recovery is much more possible if you catch and arrest progression early on. And 1 year is early on. So, your doing the right thing aggressively seeking diagnosis. Meanwhile, try to minimize stress and stop the push-crash thing. Many stories of us PwME contributing to disease progression this way. Find a doc willing to dig deeper into all the exclusionary diagnosis for me/cfs......they may very well find something else, and it would likely be more treatable. One place you can find a list of exclusionary diagnosis' is on the Canadian Consensus Document. Let me know if you need a link.

 

[taniaaust1]

Sounds like POTS.. probably also hyperPOTS which has adrenaline surges which isnt uncommon in ME/CFS. You really need to find yourself a specialist in POTS and be tested for it (unfortunately POTS can be a lot worst after a pregnancy as blood volume is boosted in pregnancy which could be currently helping you some, so seek help now for it, dont wait).

POTS will give you the headache, the fatigue, the tachycardia and other symptoms. (the hair loss was probably caused by your thyroid issues). Having treatment for your POTS could be quite helpful. (You can also try medical compression stockings up to the thighs 30-40 pressure if you can tollerate that pressure, if not lower), boosting your fluids and salt loading for POTS)

Note: raising ones arms is a known POTS trigger (one of many POTS triggers) see http://www.dinet.org/what_to_avoid.htm I strongly suggest for you to check all the POTS info at that website..
........................................

I've had about 4 of these crashes that last about a week each time.

My ME started out with crashes which lasted a week at a time and over time I crashed more and more for longer periods by a year later, I was completely BEDBOUND and spent 9mths in bed not even being able to walk to a loo much of that time, my 9-10yr old had to became my carer and had to become like a mother to my younger child..

Its essential for you to also find a specialist who knows about ME (not just CFS in which the CBT and GET crap is often prescribed, which dont tend to help ME patients) so you will have some good support if you do get a lot worst which you may well do (as its very hard to get enough rest when you have children).

Mold can make ME worst and many of us do need to try to avoid it as we cant detoxify properly. You may have a genotype which doesnt cope at all with molds.

Another thing which may be quite important seeing you are pregnant.. is to make sure you have been tested for MTHFR polymorphism .. as methylation issues are common in ME patients and MTHFR polymorphism is a methylation issue, which is a very common genetic problem (9-18% of the normal population have it but would be even more common in CFS/ME patients). It can cause miscarriages at any time during a pregnancy, an increased risk which is preventable by taking baby asprin (along with other supplements to make up for the issues of it) if you know you have MTHFR polymorphism. So get yourself tested for it. All pregnant females with ME/CFS should be tested for it.

Best luck

 

[Shell]

Hi. Sounds hyperPOTsie to me as well. I am assuming the hypothyroid is being treated. Your symptoms are almost identical to mine; which might not be what you want to hear, sorry.
If you can find a cardiologist who knows about dysautonomias such as POTS and is willing to do the "flight and fight" tests that would be good. I you have good insurance you should be able to get a tilt table test although it might be better to wait until your baby is born for that.
You could do yourself a poor man's tilt table test HERE's THE HOW.
So foggy right now...I'll come back to you.

 

[kinshealth]

Hi Kinshealth, your anxiety over what is going wrong with your body is something everyone here is all too familiar with. Plenty of empathy and helpful people here....so I'm sure you will get some good feedback. Just what's comes to my mind for now:

People more qualified than myself around here sure to comment on mold toxicity. I don't know about mold exposure hitting that hard early on. But then my niece got really sick in a house with mold. I'm just not sure how long they had been exposed before learning that to be the problem. She did say her and the kids were all losing their hair, in addition to being quite ill. They all made dramatic recoveries just changing the environment.

Almost all of your symptoms are common for PwME.....especially true with how stress precipitates your crashes. But then me/cfs is not the only thing that can cause this. One difference with this symptom belonging to me/cfs vs most other illnesses with this symptom, is that our crashes are often delayed, sometimes a day later. Not always the case, but it can narrow the diagnostic differential. Sleep problems, as well as POTS are also common for us.

Adrenal insufficiency, or Addisons can cause some of those symptoms. I would have more testing on this. I would also get a sleep study....one that includes Upper Airway Resistance Syndrome. Also, the viral infections they turned up may need more attention. I'm glad you saw the cardiologists. If they were thorough, that could at least rule out cardiac issues as being anything primary....and that would take a load off your mind.

Obviously early diagnosis is very important with any problem, especially true with me/cfs since recovery is much more possible if you catch and arrest progression early on. And 1 year is early on. So, your doing the right thing aggressively seeking diagnosis. Meanwhile, try to minimize stress and stop the push-crash thing. Many stories of us PwME contributing to disease progression this way. Find a doc willing to dig deeper into all the exclusionary diagnosis for me/cfs......they may very well find something else, and it would likely be more treatable. One place you can find a list of exclusionary diagnosis' is on the Canadian Consensus Document. Let me know if you need a link.

Hi Tristen! Can you tell me what PwME is exactly? I tried to have a sleep study done but they didn't think it was neessary. I'm thankful that those nights of waking up constantly feeling like I was having a heart attack becuase I could breath have not returned since July. I pray they stay away. Now I just have air hunger thorughtout the day or randomly. If you could please share a link to the canadian consensus that would be wonderful!

 

[kinshealth]

Hi. Sounds hyperPOTsie to me as well. I am assuming the hypothyroid is being treated. Your symptoms are almost identical to mine; which might not be what you want to hear, sorry.
If you can find a cardiologist who knows about dysautonomias such as POTS and is willing to do the "flight and fight" tests that would be good. I you have good insurance you should be able to get a tilt table test although it might be better to wait until your baby is born for that.
You could do yourself a poor man's tilt table test HERE's THE HOW.
So foggy right now...I'll come back to you.

Shell,

Hope you are less foggy now What has been your diagnosis thus far? I'm curious more about your story since you say your symptoms are similar? The last cardiolosgist I saw thinks my issue is low aldosterone but bieng pregnant he doesn't want to treat. I'll have to look into hyperPOTs some more. I have not heard of this! What has helped you If anything?

J

 

[kinshealth]

Sounds like POTS.. probably also hyperPOTS which has adrenaline surges which isnt uncommon in ME/CFS. You really need to find yourself a specialist in POTS and be tested for it (unfortunately POTS can be a lot worst after a pregnancy as blood volume is boosted in pregnancy which could be currently helping you some, so seek help now for it, dont wait).

POTS will give you the headache, the fatigue, the tachycardia and other symptoms. (the hair loss was probably caused by your thyroid issues). Having treatment for your POTS could be quite helpful. (You can also try medical compression stockings up to the thighs 30-40 pressure if you can tollerate that pressure, if not lower), boosting your fluids and salt loading for POTS)

Note: raising ones arms is a known POTS trigger (one of many POTS triggers) see http://www.dinet.org/what_to_avoid.htm I strongly suggest for you to check all the POTS info at that website..
........................................



My ME started out with crashes which lasted a week at a time and over time I crashed more and more for longer periods by a year later, I was completely BEDBOUND and spent 9mths in bed not even being able to walk to a loo much of that time, my 9-10yr old had to became my carer and had to become like a mother to my younger child..

Its essential for you to also find a specialist who knows about ME (not just CFS in which the CBT and GET crap is often prescribed, which dont tend to help ME patients) so you will have some good support if you do get a lot worst which you may well do (as its very hard to get enough rest when you have children).

Mold can make ME worst and many of us do need to try to avoid it as we cant detoxify properly. You may have a genotype which doesnt cope at all with molds.

Another thing which may be quite important seeing you are pregnant.. is to make sure you have been tested for MTHFR polymorphism .. as methylation issues are common in ME patients and MTHFR polymorphism is a methylation issue, which is a very common genetic problem (9-18% of the normal population have it but would be even more common in CFS/ME patients). It can cause miscarriages at any time during a pregnancy, an increased risk which is preventable by taking baby asprin (along with other supplements to make up for the issues of it) if you know you have MTHFR polymorphism. So get yourself tested for it. All pregnant females with ME/CFS should be tested for it.

Best luck

Thanks for the reply! I have not felt better since getting pregnant although I have not "crashed" since becoming pregnant. I have had genetic testing done and I do have MTHFR. I've been treating that as well for quite sometime. This is my 3rd pregnancy without any issues. Is it common with CFS for all of these symptoms to come on very suddenly like this? I'm sorry what is ME? As far as the mold I'm not sure this is my probelm. I was in Japan when this all started but my symptoms continue at home in AZ. Our home is new although I will check it for mold soon just to make sure.

 

[Shell]

Shell,

Hope you are less foggy now What has been your diagnosis thus far? I'm curious more about your story since you say your symptoms are similar? The last cardiolosgist I saw thinks my issue is low aldosterone but bieng pregnant he doesn't want to treat. I'll have to look into hyperPOTs some more. I have not heard of this! What has helped you If anything?

J

I'm less foggy now .
I became ill ten years ago when I was pregnant. For 7 years I had no dx and was finally dx with fibromyalgia. My symptoms are relapsing remitting. I've had some short remissions usually at the beginning of subsequent pregnancies.
I was dx with ME last year.
I have also been dx with hypertension about two years ago.
Having done the daft rounds of docs I requested a referral to a named Cardio and he has dx me with Inappropriate Sinus Tachycardia.
He has said he will test my "flight and fight" responses which I assume means he is thinking hyper POTS too.

I did a couple of poor man's TTT and showed them to my GP so he referred me. I had a supine heart rate of around 88 and upright of 126 or more. Staying upright would send my heart rate up to the 140s 150s. (other POTsies often go even higher)
My BP would shoot up to scary levels and then come bombing down. Really nasty feeling.
The docs are still trying to medicate my heart and BP to normal levels. I don't think I'm going to get the hyper tests until they've finished messing with the drugs.

According to Patrick Woods et al fibromyalgia could be a type of hyperPOTS rather than rheumatalogical. He has found that levels of standing dopamine in FMS patients were low.
This would mean that either norepinephrine was not being transformed into dopamine or that is was but the dopamine uptake wasn't working. Or that the dopamine uptake was working for the re-uptake wasn't. Either way dopamine levels were too low.
I am guessing my dopamine levels are all over the place and that would explain the tremor which is far worse when i stand up.(to quote Woods succint description; too much dopamine results in schizophrenia and none at all results in Parkinsons, but what about just not having enough?)
I get bloodpooling, POTs rash and pre-syncope and severe raynauds which may or may not be the reason my feet keep turning blue.
On Candesartan for BP and Ivabradine for IST and stuff for my knackered lungs. My lung probs have increased massively since a severe crash 3 years ago. Some is asthma, some is orthostatic.
In the UK there are hardly any knowledgable medics so I am very blessed indeed to have the Prof (Cardiologist) at my local hospt. He is one of the few POTs experts we have and even he doesn't know much about hyperPOTS as POTS with NMH is more common and it's all supposed to be rare.

I have an Omron sphig and pulse oxometer. Very useful to getting to see what's happening.

Hope there;s something useful there x

 

[Tristen]

Hi Tristen! Can you tell me what PwME is exactly? I tried to have a sleep study done but they didn't think it was neessary. I'm thankful that those nights of waking up constantly feeling like I was having a heart attack becuase I could breath have not returned since July. I pray they stay away. Now I just have air hunger thorughtout the day or randomly. If you could please share a link to the canadian consensus that would be wonderful!

There is actually a thread on this site with the CCD.. Just scroll down to "exclusions": http://forums.phoenixrising.me/index.php?threads/canadian-consensus-criteria-for-cfs-me.5191/

Here's the International definition for ya too: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

sorry, PwME = People with Myalgic Encephalomyelitis