Hot flashes from posture.

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so I have an unusual symptom, I think may be related to CFS/ME but basically, I have hate flashes whenever my body is completely flat, or I’m sitting up straight, or standing up. Has anyone else experienced this. I usually get a rapid pounding heartbeat, slightly dizzy. I’m thinking it may be POTS. But I get it even Latin down flat.
 

Mohawk1995

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First off there are no "unusual" symptoms with ME/CFS at least in my thinking. All of them in my thinking can be related to an "upregulated" Neuro-immune, Neuro-Protective or Neuro-inflammatory system. This is either the result of:
  • Hyper-Vigilant Dysfunctional Neurophysiology (upregulated) in relationship to what is present. In other words an over-reactive response to minimal or non-existent threats. This is real physiology and definitely supported by modern Neuroscience. It is not someone making it up or that someone is consciously over-reacting.
  • Hyper-Vigilant Neurophysiology (upregulated) in relationship to what is present. In other words a strong reaction to a significant threat. This threat may be as yet to be identified.
Upregulation either way can create Increased Heart Rate, Increased Perspiration, Increased Respiration Rate, Increased Temperature. Regardless of position, although whatever position raises the "interpreted" threat level will result in further upregulation. The greater the real or the interpreted threat, the more significant and the more widespread (other systems) the response.
 
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So is it
First off there are no "unusual" symptoms with ME/CFS at least in my thinking. All of them in my thinking can be related to an "upregulated" Neuro-immune, Neuro-Protective or Neuro-inflammatory system. This is either the result of:
  • Hyper-Vigilant Dysfunctional Neurophysiology (upregulated) in relationship to what is present. In other words an over-reactive response to minimal or non-existent threats. This is real physiology and definitely supported by modern Neuroscience. It is not someone making it up or that someone is consciously over-reacting.
  • Hyper-Vigilant Neurophysiology (upregulated) in relationship to what is present. In other words a strong reaction to a significant threat. This threat may be as yet to be identified.
Upregulation either way can create Increased Heart Rate, Increased Perspiration, Increased Respiration Rate, Increased Temperature. Regardless of position, although whatever position raises the "interpreted" threat level will result in further upregulation. The greater the real or the interpreted threat, the more significant and the more widespread (other systems) the response.
so is it basically anxiety??
 

Mohawk1995

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No. I would classify anxiety as more of a conscious/thinking issue although it can be made far worse by a hyper-vigilant or upregulated nervous system. The vast majority (exact percentage is up for debate) of the nervous system is outside the direct control of any person. So this upregulation can be activated without any thought. Think about stepping out on the street as you notice a car come barreling down the road at you. It is not really that scary (conscious) until after you have jumped out of the way.

An upregulated nervous system is one that is in the "fight or flight" mode. Healthy physiology would be that it is upregulated to a known threat (injury, immediate danger, abuse) but for unknown reasons someone's nervous system can be upregulated without a seriously dangerous threat.

Think of it as alarms going off all over the place and the police, fire department, Sheriff, Search and Rescue and the Military are all responding. It could be a known threat or it could be a "false alarm". But it is very real physiology.
 

xebex

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No. I would classify anxiety as more of a conscious/thinking issue although it can be made far worse by a hyper-vigilant or upregulated nervous system. The vast majority (exact percentage is up for debate) of the nervous system is outside the direct control of any person. So this upregulation can be activated without any thought. Think about stepping out on the street as you notice a car come barreling down the road at you. It is not really that scary (conscious) until after you have jumped out of the way.

An upregulated nervous system is one that is in the "fight or flight" mode. Healthy physiology would be that it is upregulated to a known threat (injury, immediate danger, abuse) but for unknown reasons someone's nervous system can be upregulated without a seriously dangerous threat.

Think of it as alarms going off all over the place and the police, fire department, Sheriff, Search and Rescue and the Military are all responding. It could be a known threat or it could be a "false alarm". But it is very real physiology.
I love your explanations of things it certainly follows along my line of thinking. However I’ve done brain training to try and calm the nervous system and ultimately I’ve got worse, even though I did have a period about 6 months of higher function of course I ended up pushing too hard. I read elsewhere your son got better how did he manage it?
 

Mohawk1995

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@xebex Our son's journey to getting better was a long one and although I think there are some things I learned along the way, I am not sure it is all explainable. Sorry for the long explanation, but I think it was a process that led him (us) down this road.

He was diagnosed with "Atypical Migraines" in 7th grade. He awoke with severe headaches, visual field loss and brain fog and returned to bed to sleep into the afternoon. He had strings of days (27 in a row once) where he was not functional. He also had strings of days where he was functional, but only completed one year of school from 7th -12th grade. He was better in the summer and was able to play baseball until the year he went for ME/CFS treatment.

In the 4th year of chasing the migraines, we went to a headache specialist in Michigan who was the first to say that this didn't appear to be a primary migraine problem. She felt it was primarily an energy problem. That led us down the road of looking for answers and we came across ME/CFS. After looking at medical "position papers" and calling every doctor listed as an author, we were able to get in to see Dr Lerner quickly.

Dr. Lerner confirmed the diagnosis of ME/CFS and pursued anti-viral treatment. Of course there were insurance issues, delays and battles. Second opinions and more, but eventually we settled on a Course of IV infusions with Cidofovir every two weeks and oral antivirals in between for 12 weeks. We waited until he was 18 years old so he could choose to pursue this himself (we did not want another Justina Pelletier fiasco).

It was apparent after the first infusion, that he was having a different response than he had with prior treatments. Most importantly his brain fog was lifting and he was able to engage in conversations. Dr Lerner pretty much forbid him from exercising so during this time, he gained 30-40 lbs.

After completing the IV infusions we continued with oral antivirals for another 6-8 weeks but he started to wear down and we felt he needed a break. So from that point on, we focused on Rehab/Recovery and making gradual steps. He started to go to college, but failed the traditional route. He switched to a Junior College and found more success. He started a part time job pulling parts in a warehouse. Started to watch more what he ate (balanced diet). Eventually he was able to do traditional college studies and worked himself up to loading trucks in a warehouse. This whole Rehab/Recovery process took 3 years.

Today, he is 3 credit hours from a Bachelor degree in Exercise science (hard finding a internship with COVID!) and he starts Nursing School in March. He has returned to loading trucks in the warehouse as he loves the physical challenge and does better as part of a team. He also recently got married. Not sure where the future is leading completely, but we are so thankful for where he is. We know it is not common to have this type of recovery with ME/CFS.

Hope that was informative and also encouraging. Definitely part of his wanting to go into Nursing is to pay it back. We would all say that we take life less for granted than we did before ME/CFS.
 
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No. I would classify anxiety as more of a conscious/thinking issue although it can be made far worse by a hyper-vigilant or upregulated nervous system. The vast majority (exact percentage is up for debate) of the nervous system is outside the direct control of any person. So this upregulation can be activated without any thought. Think about stepping out on the street as you notice a car come barreling down the road at you. It is not really that scary (conscious) until after you have jumped out of the way.

An upregulated nervous system is one that is in the "fight or flight" mode. Healthy physiology would be that it is upregulated to a known threat (injury, immediate danger, abuse) but for unknown reasons someone's nervous system can be upregulated without a seriously dangerous threat.

Think of it as alarms going off all over the place and the police, fire department, Sheriff, Search and Rescue and the Military are all responding. It could be a known threat or it could be a "false alarm". But it is very real physiology.
Thank you for explaining it to me!!!
 
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@xebex Our son's journey to getting better was a long one and although I think there are some things I learned along the way, I am not sure it is all explainable. Sorry for the long explanation, but I think it was a process that led him (us) down this road.

He was diagnosed with "Atypical Migraines" in 7th grade. He awoke with severe headaches, visual field loss and brain fog and returned to bed to sleep into the afternoon. He had strings of days (27 in a row once) where he was not functional. He also had strings of days where he was functional, but only completed one year of school from 7th -12th grade. He was better in the summer and was able to play baseball until the year he went for ME/CFS treatment.

In the 4th year of chasing the migraines, we went to a headache specialist in Michigan who was the first to say that this didn't appear to be a primary migraine problem. She felt it was primarily an energy problem. That led us down the road of looking for answers and we came across ME/CFS. After looking at medical "position papers" and calling every doctor listed as an author, we were able to get in to see Dr Lerner quickly.

Dr. Lerner confirmed the diagnosis of ME/CFS and pursued anti-viral treatment. Of course there were insurance issues, delays and battles. Second opinions and more, but eventually we settled on a Course of IV infusions with Cidofovir every two weeks and oral antivirals in between for 12 weeks. We waited until he was 18 years old so he could choose to pursue this himself (we did not want another Justina Pelletier fiasco).

It was apparent after the first infusion, that he was having a different response than he had with prior treatments. Most importantly his brain fog was lifting and he was able to engage in conversations. Dr Lerner pretty much forbid him from exercising so during this time, he gained 30-40 lbs.

After completing the IV infusions we continued with oral antivirals for another 6-8 weeks but he started to wear down and we felt he needed a break. So from that point on, we focused on Rehab/Recovery and making gradual steps. He started to go to college, but failed the traditional route. He switched to a Junior College and found more success. He started a part time job pulling parts in a warehouse. Started to watch more what he ate (balanced diet). Eventually he was able to do traditional college studies and worked himself up to loading trucks in a warehouse. This whole Rehab/Recovery process took 3 years.

Today, he is 3 credit hours from a Bachelor degree in Exercise science (hard finding a internship with COVID!) and he starts Nursing School in March. He has returned to loading trucks in the warehouse as he loves the physical challenge and does better as part of a team. He also recently got married. Not sure where the future is leading completely, but we are so thankful for where he is. We know it is not common to have this type of recovery with ME/CFS.

Hope that was informative and also encouraging. Definitely part of his wanting to go into Nursing is to pay it back. We would all say that we take life less for granted than we did before ME/CFS.
Thank you for that!! Definitely needed this!!
 

xebex

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@Mohawk1995 wow thanks for your story! My ME also (potentially) started years earlier with severe migraines then once I got ME the migraines bizarrely disappeared! It’s like they dispersed into my entire body instead.
 

Mohawk1995

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@xebex He had a similar course. By the 5th year of his disease he was mainly having brain fog, fatigue and irritability as well as requiring more than normal sleep.
 

lenora

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@xebex Our son's journey to getting better was a long one and although I think there are some things I learned along the way, I am not sure it is all explainable. Sorry for the long explanation, but I think it was a process that led him (us) down this road.

He was diagnosed with "Atypical Migraines" in 7th grade. He awoke with severe headaches, visual field loss and brain fog and returned to bed to sleep into the afternoon. He had strings of days (27 in a row once) where he was not functional. He also had strings of days where he was functional, but only completed one year of school from 7th -12th grade. He was better in the summer and was able to play baseball until the year he went for ME/CFS treatment.

In the 4th year of chasing the migraines, we went to a headache specialist in Michigan who was the first to say that this didn't appear to be a primary migraine problem. She felt it was primarily an energy problem. That led us down the road of looking for answers and we came across ME/CFS. After looking at medical "position papers" and calling every doctor listed as an author, we were able to get in to see Dr Lerner quickly.

Dr. Lerner confirmed the diagnosis of ME/CFS and pursued anti-viral treatment. Of course there were insurance issues, delays and battles. Second opinions and more, but eventually we settled on a Course of IV infusions with Cidofovir every two weeks and oral antivirals in between for 12 weeks. We waited until he was 18 years old so he could choose to pursue this himself (we did not want another Justina Pelletier fiasco).

It was apparent after the first infusion, that he was having a different response than he had with prior treatments. Most importantly his brain fog was lifting and he was able to engage in conversations. Dr Lerner pretty much forbid him from exercising so during this time, he gained 30-40 lbs.

After completing the IV infusions we continued with oral antivirals for another 6-8 weeks but he started to wear down and we felt he needed a break. So from that point on, we focused on Rehab/Recovery and making gradual steps. He started to go to college, but failed the traditional route. He switched to a Junior College and found more success. He started a part time job pulling parts in a warehouse. Started to watch more what he ate (balanced diet). Eventually he was able to do traditional college studies and worked himself up to loading trucks in a warehouse. This whole Rehab/Recovery process took 3 years.

Today, he is 3 credit hours from a Bachelor degree in Exercise science (hard finding a internship with COVID!) and he starts Nursing School in March. He has returned to loading trucks in the warehouse as he loves the physical challenge and does better as part of a team. He also recently got married. Not sure where the future is leading completely, but we are so thankful for where he is. We know it is not common to have this type of recovery with ME/CFS.

Hope that was informative and also encouraging. Definitely part of his wanting to go into Nursing is to pay it back. We would all say that we take life less for granted than we did before ME/CFS.
Mohawk 1995,

First off, I want to say how happy I am for your family. That your son came out of this is truly heartwarming.

Your explanation of anxiety is a good one, but then add a menopausal woman with hot flashes on top of all of it and you quickly have a nightmare on your hands. Or it could be called, 'The Never Ending Story.'

I think a great many of us suffer from anxiety either intermittently or enough that we need medication. I tried very hard to go the non-medicinal route and it worked for awhile....then, years later, I was faced with another set of crises and it quickly went from anxiety to wanting to really self-harm myself. It was in the time it takes to snap your fingers. And the thought wouldn't stop for a second. Thus, medicine was necessary and I can assure that I was grateful for it as it keeps it under control. I've been on the same one for 7-8 yrs. now.

For those of you who find yourself in my particular predicament, tell your neurologist ASAP. Depending upon the state you live in, he can either help or tell you what to do to get help. One minute we can be fine, and then we fall off a cliff. I wish each of you well....Yours, Lenora.
 

Mohawk1995

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Thus, medicine was necessary and I can assure that I was grateful for it as it keeps it under control. I've been on the same one for 7-8 yrs. now.
Yes for the vast majority of the time since the initiation of his disease he took an antidepressant/mood stabilizer. No person with ME/CFS should be ashamed to take medication that can diminish the very real chemical and hormonal number this does on our brain.

BTW he has attempted to go off the antidepressants off and on over the years even since recovery. I would say he needs them less now than initially after recovery, but that has been a process. Even with recovery, there is still a large wake this disease creates that can take years to recover from emotionally.

I feel like just now 4 years after his recovery are my wife and I at a point that we can say that the weight of the disease has lifted. We will forever be changed and not all for the worse.
 

lenora

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Hi@Mohawk1995,

I want to commend you on your C.S.Lewis quotation. We know nothing, except we think we do, until we're faced with something soul-searing ourselves. You are different people, your son is a different person (as shown by going into nursing) and anyone else really close to the situation is different. In some respects this illness takes us on a journey we didn't want to take, but oh, the things we learn. I feel that I am a whole person, now, albeit a lawed one. I agree, with you, sometimes changes like this aren't always for the worse. We grow from them and because of them. Is it hard, absolutely, but it's the hard-won journeys that are the most renowned. Yours, L.