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HH seems to be worst at night..

Posted , 8 users are following.

Chelle69
Chelle69

Just wondered if anybody else is feeling like me and they are suffering with sleepless nights and there HH seems worst  during the night?  I have chest pains, stomach pain and wake up trying to catch my breath, which has happened a few times and really scary. I can only sleep (sitting upright I might add!) for about 2 to 3 hours then something wakes me up?? and I've got chest/stomach pains and I'm too scared to sleep again.  Not sure if it's the Simvastatin tablets that I have to take at night? Or if it's the HH? Or if it's a heart problem etc, I am really scared and beginning to hate night time and going to bed, think my hubby is fed up of me too as I disturb him every night.  I'm having to wait until April to have a cardio MRI scan and a CT angiogram but really not sure if I can make it until then or something terrible is going to happen. Sorry for the rant but I'm really scared right now and GP not offering much help either, just so scared and wonder if anyone else is the same as me and if it's the HH causing it all?just really scared!

1 like, 13 replies

13 Replies

  • Primrosegirl
    Primrosegirl Chelle69

    Posted

    So sorry you are still suffering so much with these strange symptoms and having to wait so long for tests Michelle. I have no idea why this should be but hope you get it sorted soon.

    Best wishes,

    Hugs

    Jen xxx

    • Chelle69
      Chelle69 Primrosegirl

      Posted

      Hi Jen,

      ?Thanks for your lovely kind words, I think I'm just a lost cause really! how are you getting on? Are you still having to have venesections or are you at a good level now? Do hope your well and feeling much better yourself.

      ?Best wishes and big hugs back  

      ?Michelle xxx

       

  • Primrosegirl
    Primrosegirl Chelle69

    Posted

    I am still having venesection, but at monthly intervals now this is to allow my hb to recover. My ferritin is down to 380, so things are going in the right direction!

    I am seeing an ENT specialist because of me coughing blood, but no-one thinks it's anything to do with the HH, so that's a bit of a worry at the moment..

    Take care.

    Jen xx

    • Chelle69
      Chelle69 Primrosegirl

      Posted

      Just seen your post you put up yesterday really sorry to hear that you've got this problem with coughing up blood, you must be quite worried. 

      I was told the same that it wasn't the HH causing my symptoms, but I recently went into hospital and it turns out that they did think that it could be the HH causing my symptoms after all. They have referred me for a couple of scans in April to check this out. 

      I do hope you get it sorted out when you the see the specialist, hopefully your appt will be quite soon and you will feel better once you know what's causing it  

      Do let me know how you get on.

      Best wishes and take care for now

      ?

      Michelle xx

      ? 

       

    • Primrosegirl
      Primrosegirl Chelle69

      Posted

      Thanks Michelle, I hope to get to see someone soon.

      That it really positive that they think your symptoms are related to your HH it must make you feel a little better, what is your ferritin levels now, I'm sure when they start to come down things will begin to improve for you, I do hope so ...xxx

  • selina58849
    selina58849 Chelle69

    Posted

    I haven't had the same symptoms as you but I do get stiff neck and shoulder muscles and I have bursitis in the shoulder keeping me up at night. Also the lymph nodes in my armpits swell up during the night so I have trouble sleeping and oh to have no pain! I feel ya hun! Waking up I'm in pain and tired still. I hope you get some answers soon.

    • Chelle69
      Chelle69 selina58849

      Posted

      Hi Selina

      ?Oh gosh that all sounds really painful to me! I was getting neck pain too at one time but that's eased a lot now thankfully. I hope you can get some help for your problems it's so awful not being able to sleep at night and feeling tired all the time, I've begun to hate night time, it's like when I was a little girl again and being scared of the dark nights! 

      Do hope you get your problems sorted and start feeling better and you get a decent night's sleep soon.

      ?Best wishes from one tired out gal to another! xx

      A 

  • robert71867
    robert71867 Chelle69

    Posted

    So sorry to hear.

    HH patients do seem more likely to have panic attacks. You can get them in your sleep. I use melatonin 5mg to help sleep better due to pain.

    You may look into this being another side effect of HH and ask the Dr. for some meds. A panic attack will FEEL like you are dying, but you are okay. Breathing exercises help a lot, google search them for anxiety. Also visit the Dr. and have your anxiety/ depression checked out.

    Hope this helps, hang in there !

    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    • Chelle69
      Chelle69 robert71867

      Posted

      Thanks for the info Robert didn't know HH was worst at night and it could cause panic attacks, I will mention this to my GP on next appt, maybe those tablets you mentioned may help me get some sleep!  It drives me crazy! It's not like I'm not tired I just keep waking up or being woken up by something...it's weird!

      ?Hope your doing OK Robert and thanks again for the advice.

      ?Best wishes

  • sheryl37154
    sheryl37154 Chelle69

    Posted

    Chelle, everyone - please get symptoms checked out as if you do not have HH!  Venesections do not cure everything.  Health issues need to be treated same as if you do not have HH.  Do not let a dr say well it is from having HH and then do nothing about it.

    Health issues that HH causes occur when you have had very high ferritin for years before diagnosis and treatment.  Reduction in ferritin levels after treatment usually stop the progress of any severe health issues caused by HH (with the exception of liver cancer).

    Says me who still suffers from fatigue and aching body pain 26 years after diagnosis and treatment.  I did suffer severe classic HH symptoms for 9 years before diagnosis (when my hips broke up) and my ferritin levels have been <50 for many years.  But I am still looking for other causes for feeling like this and any treatments which will alleviate this problem.  My haematologist says because I have been de-ironed I should not have any more symptoms but I know from speaking to a world renown HH researcher that my problems most likely stem from still having an overly high TS%, and he is talking about this being the situation for more than 6-13 years which mine definitely has been.

    So, good luck Chelle, and keep pushing for a diagnosis and treatment.

     

    • Chelle69
      Chelle69 sheryl37154

      Posted

      Thanks for the advice Sheryl.  I am in the process of getting various tests done just had an MRI done last week and awaiting results of that. You do get mixed reactions from different health care providers as to wether they think it’s connected to the HH or not, but like you say just treat it as though it’s a health issue on its own and not always to do with HH!

      Hope your doing ok and feeling well Sheryl?

      Best wishes x

       

    • Entwicklung34
      Entwicklung34 Chelle69

      Posted

      I can see its been a really long time since this post but having similar symptoms to yourself so would really appreciate an update if you see this 🙏

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