I have to lie down to feel better

Brain and nerves
,
1

OK, I’ll try and keep this as short as I can.

I have a light headed feeling all the time, with dizziness and general unwellness. I find it hard to breath normally and too much talking or information throws me into overload.

A lot of these symptoms go when I lay down. I still don’t feel 100% but it’s like my safe space.

Have been to doctors who diagnosed depression. I am on 50mg sertraline. I have a busy stressful job and a busy household. I feel like I don’t stop. I understand the diagnosis but I’m not entirely convinced. The meds lift my mood a little bit don’t alleviate any symptoms (apart from laying down).

I’ve had chest x-rays and heart scans which came back ok. A heart murmur was found initially but on follow up checks it was not found.

When ever I get aroused I get short of breath. If I ejaculate through either sex or masturbation I have an even weirder sensation in my head, chest and strangely my mouth (like phlegm).

My bloods are ok however when I give blood my iron is always borderline. I have tried increasing iron in my diet too. The doctors aren’t concerned about my levels as they’re just above the cause for concern.

I’m at a loss with my doctors and have had private blood tests done. They keep bringing up low ferritin. I go to the doctor’s and they’re not concerned.

I’m exhausted by the symptoms and also the back and forth trying to get a diagnosis. Maybe it is depression and I need to slow down?

Lastly, may be relevant, may not be… I had spinal surgery 13 years ago. I had lumbar discectomy where they cut parts of my lower discs out which had mushroomed out and impinged my nerves. I’ve been looking into CSF leaks and all sorts but still at a loss.

If anyone has any help, inspiration or words I’d love to hear from you all.

Thanks

Karl

2

Hi Karl,

I’m really sorry to hear that you’re not feeling well. I just had a few questions that might help clarify things further.

  1. Have you noticed any changes in your vision around the time the dizziness began?
  2. Any hearing loss or changes in your sense of taste?
  3. Have you experienced any memory issues?
  4. Do your symptoms improve or worsen depending on whether you’re around family, co-workers, or in different environments?

Based on what you’ve described, I don’t necessarily think this is neurological, but it may still be worthwhile to get a neurologist’s perspective, just to rule out any underlying causes.

What I’ve written below may be information you’re already aware of, but I hope it helps organize your symptoms and possible diagnoses to better guide your next steps and discussions with healthcare providers.

  1. Constant light-headedness/dizziness
  2. General unwellness
  3. Shortness of breath, especially when talking or aroused
  4. Mental overload with stimulation
  5. Symptoms relieved (partially) by lying down
  6. Exhaustion
  7. Strange sensations during/after ejaculation
  8. History of spinal surgery
  9. Low-normal iron/ferritin levels
  10. Mild improvement on sertraline (antidepressant), but symptoms persist

Possible Diagnosis:

  1. Orthostatic Intolerance / Dysautonomia
  2. Low Ferritin / Iron Deficiency Without Anemia
  3. CSF Leak Consideration
  4. Hyperventilation syndrome
  5. Adrenal insufficiency
  6. Thyroid dysfunction
  7. Sleep apnea
3

Hi, thank you so much for your reply.

If I’m being honest I’ve felt like this for nearly 10 years, I don’t think my vision has deteriorated at all. A long while ago my opticians referred me to hospital as something wasn’t right behind my eyes, something about the blood vessels being squiggly. They checked my blood pressure and the signed me off. All optician visits after have been OK.

My hearing seems fine, my taste buds seem a bit bland, most of the time when I eat I’m congested and I have to stop eating to mouth breath because I don’t feel like I can breath through my nose and eat at the same time. It’s a simple task but I seem to struggle with it.

Occasionally my feet and hands go purple in the cold. I was also reading up on POTS, that’s quite interesting…

My memory seems fairly good, but sometimes I can hear things and yet not take it in. I’m so busy running my own business I have sort of adapted to ignore irrelevant information. That sounds harsh but sometimes if people tell me things I just don’t need to know I shut off. This does cause a few problems at home sometimes, especially if my wife says something I’m just not interested in.

I wonder if I should stop donating blood for a while? I donate every 12 weeks. I’ve never been told I can’t donate but wondering if it will help my iron stores.

My symptoms tend to improve when I’m on my own. The dizziness is still there but my breathing is better and I feel like I can relax more.

I guess I just like me time. The thought of not being available for anyone. Sometimes I don’t even take my phone out.

I’ve always been a people pleaser. I stopped drinking alcohol four years ago to help my mental health. Now it seems I need depressants to take the edge off. I really think it’s mental illness, maybe heading towards a burnout.

I think I need to establish more boundaries. But that’s not easy for me. I’m kind of stuck in my job. I have a great living, and I couldn’t get a better wage anywhere else. I inherited the family business along with my sisters. I’m very fortunate but it does also take its toll, sometimes I feels like a burden. I deal with staff, family, customers… I’m always available but it seems no one is there for me. I’ve done it so long now it’s just expected.

I feel guilty for writing all this, people would kill for what I have. Money can’t buy you happiness though.

I just do what I know best and try to be the best version of myself.

Thank you for listening. If I can help you at all you know where I am :upside_down_face:

4

Hello Karl,

My initial reaction to “I have a light headed feeling all the time, with dizziness and general unwellness. I find it hard to breath normally…. “ was “That sounds like my symptoms.”

I put up with it until I had a virus and my symptoms wouldn’t shift for 2 months. Went to see GP and they suspected that I had developed a chest infection and sinusitis. Got x-rays to confirm and antibiotics to clear it up. The cough didn’t go away after a further 2 months. They then suspected I had asthma. After tests, it was confirmed. Am now on a combined inhaler and the light-headed, dizziness, fatigue and breathlessness went away. I was in my mid ‘50s when diagnosed.

I’m not saying that’s what you are suffering, but it’s a consideration. Particularly, as you have also mentioned, that you have/had other medical issues.

When I had depression (early ‘90s), my GP dismissed me, and I had to deal with it myself. I gave up work and, at the time, felt like I slept day & night for a year. The 2nd year I walked around in a daze, and was an emotional wreak. I suffered memory loss. Took nearly a decade to get to some form of normality. I’m much happier now. At peace with myself.

I hope you get to the root of your health issue. I wish you well.

5

Hi BHA-GothGirl, thank you so much for your reply. I’m sorry to hear you’ve had trouble in the past and experienced some of the same symptoms.

I really don’t want to go back to the doctor because I think they think I’m a fraud. They just seem to be on the “slow down” talks and breathing exercises. I’m not saying that won’t help but I feel it’s a waste of time.

I’ve been alcohol free now for 4 years. I didn’t drink loads but enough for me to question my habits. I honestly thought I’d feel better once I ditched it. I’ve had b12 injections which are meant to help with fatigue. Neither have helped. I feel like reaching for a beer and zoning out. I won’t, because I’m better than that, but it’s frustrating when you make all the changes (I started running, lost some weight) and you still feel crap.

I’m glad you feel better. There is hope x

6

Hi Karl, thanks for sharing your story. It would be good to rule out Sleep Apnea. Do you have a Oximeter Blood Oxygen Saturation Monitor? You can get them at a local drug store or on Amazon for around $40.00. When you go to bed wait about 10min and slip it on your finger and take to see what you OXY sat level is. Then when your asleep it you can get your wife to take your OXY level. If your saturation levels you’ll need to talk with your primary doctor about getting a sleep study done. If your levels are fine at least you can cross that off your list.

7

You could ask to see another doctor, asking for a second opinion. It may be a spinal leak, especially with your symptoms and what you’ve already had with your spine.

Mention this to your doctor and state that you want an immediate referral. Make notes if your symptoms and taken them in with you.

You could contact the spire hospital checking the cost, some private doctors are quite good. Ask for a neurologist.

I’m not a professional but your symptoms sound very much spinal.

Book your GP and tell them that you need an examination.

Hope this helps

8

Sandy does make a good point Karl. Especially due to your spinal surgery history and then immediately after you lay down into a supine position you feel better. That is a hallmark CSF leak symptom and should be ruled out as the bacteria growth from it can cause Spinal Meningitis