Hello guys,
I have been lurking on this forum for a while, and thought it about time i asked for some opinions...
For the past few years i have felt 'unwell' - not sick just a general underlying feeling that all is not quite right.
A brief history:
- 6ft 1in - BMI 30 - but (and i know everyone says this) I am quite well built! If i was to get my BMI down to 25 I would be extremely skinny - at a full health check 3 yrs ago my BMI was 28 and told that i should ignore it as my weight was fine for my build (i clearly did ignore it!!)
- Neck size 17
- Always suffered with back/neck ache
- Back MRI showed worn discs, commensuarate with age (37), sporting history and the fact I spend 11hrs a day stuck behind a computer
- Another Doctor diagnosed Fibromyalgia - basically told me not a lot can be done - find out what works for me - started training with a guy 1-2 times a week working on core strength - symptoms improved but not removed
Now the fun stuff!!
One night about 2 years ago, i was really struggling to get to sleep, and found myself panicking about breathing - unable to get full lung of air - felt like i was only ever getting 75% of what i should. My heart was pounding, and i got really really panicked - told my wife i thought this was it and get ready to call an ambulance. About 4am, i finally dozed off. Next night fine. 1 week later exactly the same experience.
The next day checked myself into Dr's and had a load of tests, majority to do with my heart as that was my scariest symptom. Heart got checked and aside form a very low resting heart-rate (45-50bpm resting, dropping to 39 when sleeping) all seemed ok.
Consultant believed i was suffering from Hyperventialtion syndrome and again basically told me there was no treatment for this, it was down to me to regulate/concentration on my breathing, as i was in fact overbreathing, and this is what was causing the symptoms - i was in effect reducing the levels of CO2 in my system by breathing too much, which in turn causes/generates a whole load of other, scary symptoms including the stiff neck as i am breathing with my chest rather my diaphragm(google HVS). I accepted this diagnosis quite readily and plodded on. However the night time sleeping problems just seemed to get worse, so much so that i could go 3-4 nights with very little sleep, maybe an hr or 2 - i would then literally collapse with exhaustion. Even when i get a 'good nights' sleep, i often wake feeling very stressed and breathless.
The main problem seemed/seems to be getting to sleep. When lying down and attempting to go to sleep my chest would feel very heavy and i would find myself breathing quite hard, for no apparent reason. Then when i could feel myself starting to dozing off i would get a sudden jerk/twitch or a feeling of suffocation and i would startle myself awake again. These symptoms could/do go on for hours until i finally doze off. The only time i am able to doze off quickly is if i have had a few glasses of wine - not the best solution i know but it does work. I have tried Nytol and every variant of homeopathic sleep aids but they seem to do nothing.
More recently i have noticed or at least become aware of dreams that i have had where i have felt like i was suffocating - by that i mean dreams of swimming underwater desperate to get to top, being in a scary situation and having to hold my breath in my dream, and then soemtimes i would wake, not breathing heavy but with my heart really pounding - then being petrified to go back to sleep.
During the time i was seeing heart consultant, she referred me to an ENT specialist on a very well known street, but i won't mention who. I had a home sleep test done, the results of which were inconsistent to say the least and i found the consultant to be a really difficult/awkward/arrogant guy. The sleep test 'showed' that i had mild OSA, but it seemed like the majority of evidence was coming from 1 particular sleep cycle. In short the test showed that when on my back I had a number of reduced airflow periods and reduced oxygen levels, but these only occured when i was on my back, then towards the end of the study there was a period lying where i was lying on my side, no real evidence of reduced airflow, heartrate stayed constant but oxygen levels dropped to 78%, and stayed constant at that level. the moment i moved (onto front or back i can't remember which) oxygen levels jumped back up (instantly), all other levels stayed the same. I couldn't understand this and suggested that maybe the monitor on my finger had moved producing eroneous results - he said that wasnt possible - i challenged him as he had said my apnea's were occuring when lying on my back, and during this period i was on my side - he then tried to dismiss this period saying he would concentrate on the rest of the study - I then asked him how he expected me to ignore some data that i thought was implying (if correct) that i was near to death for a while - he basically said dont worry about it, and go and see my friend who is an orthodontist and he can make me a MAD (?) or if i didn't want to spend the money i could buy one online!!!
I left confused and scared - followed it up a week later with an email to him to which he replied i shouldn't put too much emphasis on that period of the results. I won't write down to my true feelings towards the guy but suffice to say he is not my favorite person. So, since then i have basically trawled sites to try to find out what could be going on, although doing this actually made me more worried as i found more and more things i thought i had! So I tried a MAD that i bought online, but it gave me terrible toothache , and it felt like my front teeth were coming loose so I stopped using it as it didnt really seem to help in anyway.
Since then the nighttime sleep issues have remained unchanged and i guess i have just carried on, hoping that the original diagnosis of HVS was correct and trying to regulate my breathing, which beleive me is very hard to do as to retrain yourself can take months if not years.
What has prompted me to post now is that my wife has recently complained more about my snoring and that recently she has noticed some real gasping breaths, loud enough to wake her up.
Now i think i now where all this is pointing, and apologies for this being such a long post but thought it best to try to get everything down to aid peoples opinions.
So i guess my questions are,
- I have caried out the epworth sleep test but only get a score of 8 - does that mean it can still be OSA?
-could the OSA be causing the pre-sleep issues?
-Does anyone know of any crossover between HVS and OSA?
-It has been commented on by numerous Dr's that my tonsils are quite large and scarred from bad tonsilitis infections as a child - could the removal of these provide a cure/solution?
-Would a proper MAD resolve the issue. I am sure like many the prospect of wearing a CPAP mask feels me with fear - i have 2 seven yr old girls and the thought of them coming into our room at night and seeing me look like that upsets me as i know it will upset them.
-Does anyone know of a good ENT specialist in the london area?
-Does anyone else have these pre-sleep issues?
Again my apologies for this being such a long post and if you have got to this point thank you for reading!!!
Many thanks in advance for any comments/opinions you may post.
Regards
Paul
I have been lurking on this forum for a while, and thought it about time i asked for some opinions...
For the past few years i have felt 'unwell' - not sick just a general underlying feeling that all is not quite right.
A brief history:
- 6ft 1in - BMI 30 - but (and i know everyone says this) I am quite well built! If i was to get my BMI down to 25 I would be extremely skinny - at a full health check 3 yrs ago my BMI was 28 and told that i should ignore it as my weight was fine for my build (i clearly did ignore it!!)
- Neck size 17
- Always suffered with back/neck ache
- Back MRI showed worn discs, commensuarate with age (37), sporting history and the fact I spend 11hrs a day stuck behind a computer
- Another Doctor diagnosed Fibromyalgia - basically told me not a lot can be done - find out what works for me - started training with a guy 1-2 times a week working on core strength - symptoms improved but not removed
Now the fun stuff!!
One night about 2 years ago, i was really struggling to get to sleep, and found myself panicking about breathing - unable to get full lung of air - felt like i was only ever getting 75% of what i should. My heart was pounding, and i got really really panicked - told my wife i thought this was it and get ready to call an ambulance. About 4am, i finally dozed off. Next night fine. 1 week later exactly the same experience.
The next day checked myself into Dr's and had a load of tests, majority to do with my heart as that was my scariest symptom. Heart got checked and aside form a very low resting heart-rate (45-50bpm resting, dropping to 39 when sleeping) all seemed ok.
Consultant believed i was suffering from Hyperventialtion syndrome and again basically told me there was no treatment for this, it was down to me to regulate/concentration on my breathing, as i was in fact overbreathing, and this is what was causing the symptoms - i was in effect reducing the levels of CO2 in my system by breathing too much, which in turn causes/generates a whole load of other, scary symptoms including the stiff neck as i am breathing with my chest rather my diaphragm(google HVS). I accepted this diagnosis quite readily and plodded on. However the night time sleeping problems just seemed to get worse, so much so that i could go 3-4 nights with very little sleep, maybe an hr or 2 - i would then literally collapse with exhaustion. Even when i get a 'good nights' sleep, i often wake feeling very stressed and breathless.
The main problem seemed/seems to be getting to sleep. When lying down and attempting to go to sleep my chest would feel very heavy and i would find myself breathing quite hard, for no apparent reason. Then when i could feel myself starting to dozing off i would get a sudden jerk/twitch or a feeling of suffocation and i would startle myself awake again. These symptoms could/do go on for hours until i finally doze off. The only time i am able to doze off quickly is if i have had a few glasses of wine - not the best solution i know but it does work. I have tried Nytol and every variant of homeopathic sleep aids but they seem to do nothing.
More recently i have noticed or at least become aware of dreams that i have had where i have felt like i was suffocating - by that i mean dreams of swimming underwater desperate to get to top, being in a scary situation and having to hold my breath in my dream, and then soemtimes i would wake, not breathing heavy but with my heart really pounding - then being petrified to go back to sleep.
During the time i was seeing heart consultant, she referred me to an ENT specialist on a very well known street, but i won't mention who. I had a home sleep test done, the results of which were inconsistent to say the least and i found the consultant to be a really difficult/awkward/arrogant guy. The sleep test 'showed' that i had mild OSA, but it seemed like the majority of evidence was coming from 1 particular sleep cycle. In short the test showed that when on my back I had a number of reduced airflow periods and reduced oxygen levels, but these only occured when i was on my back, then towards the end of the study there was a period lying where i was lying on my side, no real evidence of reduced airflow, heartrate stayed constant but oxygen levels dropped to 78%, and stayed constant at that level. the moment i moved (onto front or back i can't remember which) oxygen levels jumped back up (instantly), all other levels stayed the same. I couldn't understand this and suggested that maybe the monitor on my finger had moved producing eroneous results - he said that wasnt possible - i challenged him as he had said my apnea's were occuring when lying on my back, and during this period i was on my side - he then tried to dismiss this period saying he would concentrate on the rest of the study - I then asked him how he expected me to ignore some data that i thought was implying (if correct) that i was near to death for a while - he basically said dont worry about it, and go and see my friend who is an orthodontist and he can make me a MAD (?) or if i didn't want to spend the money i could buy one online!!!
I left confused and scared - followed it up a week later with an email to him to which he replied i shouldn't put too much emphasis on that period of the results. I won't write down to my true feelings towards the guy but suffice to say he is not my favorite person. So, since then i have basically trawled sites to try to find out what could be going on, although doing this actually made me more worried as i found more and more things i thought i had! So I tried a MAD that i bought online, but it gave me terrible toothache , and it felt like my front teeth were coming loose so I stopped using it as it didnt really seem to help in anyway.
Since then the nighttime sleep issues have remained unchanged and i guess i have just carried on, hoping that the original diagnosis of HVS was correct and trying to regulate my breathing, which beleive me is very hard to do as to retrain yourself can take months if not years.
What has prompted me to post now is that my wife has recently complained more about my snoring and that recently she has noticed some real gasping breaths, loud enough to wake her up.
Now i think i now where all this is pointing, and apologies for this being such a long post but thought it best to try to get everything down to aid peoples opinions.
So i guess my questions are,
- I have caried out the epworth sleep test but only get a score of 8 - does that mean it can still be OSA?
-could the OSA be causing the pre-sleep issues?
-Does anyone know of any crossover between HVS and OSA?
-It has been commented on by numerous Dr's that my tonsils are quite large and scarred from bad tonsilitis infections as a child - could the removal of these provide a cure/solution?
-Would a proper MAD resolve the issue. I am sure like many the prospect of wearing a CPAP mask feels me with fear - i have 2 seven yr old girls and the thought of them coming into our room at night and seeing me look like that upsets me as i know it will upset them.
-Does anyone know of a good ENT specialist in the london area?
-Does anyone else have these pre-sleep issues?
Again my apologies for this being such a long post and if you have got to this point thank you for reading!!!
Many thanks in advance for any comments/opinions you may post.
Regards
Paul
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