Feeling broken

Posted , 3 users are following.

After nearly 19 years with this condition I am feeling completely broken. I was 17 when it first presented.

It may be I'm very emotional after a recent LP and venogram. The pain in my back from the LP is the worst I've ever had. I collapsed today after everything went black and then woke on the floor and just cried.

I don't usually feel sorry for myself, but today I'm going downhill. I fear that there is nothing more the Dr will be allowed to do for me. I believe my consultant would do all he could to try and fix me as much as possible, but the neurosurgeons will be less inclined to agree to what is suggested.

I have stents in situ and a skull base surgery to relieve pressure on my jugular vein. I fear a shunt with all my being.

No one outside my family is aware of my condition and I do not portray the image of someone who has pain. I have learned to live with the pain. I never tell anyone just how much my head hurts. I have a deep fear of being seen as just whining and moaning and that it can't be that bad because I'm not on piles of prescription medicines. I am not on any reoccurring prescriptions. Topiramate, diamox, didn't make a difference.

I can, however, say I am fed up of vomiting and being dizzy; with the throbbing headache causing me to feel useless; with how little relief I can get from general OTC pain relief. I have tried oramorph, it makes me sick as does codeine. After a short stint in a critical care unit, it was quite evident how badly my body tolerates strong pain killers.

I have IIHWOP. I am not overweight. I am not on contraception. My pressure is on the high end of normal.

My mental health is taking a real kicking today. And I see no light at the end. It is not something I can cope with for another 10 years, let alone 20 years, at this level. I have been this low before and made my way back up, but this feels different. This is worse.

2 likes, 3 replies

3 Replies

  • Posted

    PLEASE know that you are not alone. I am 2 years diagnosed and have spent the last seven months confined to my bed because of this condition.

    I have spoken to the neurologist who not only dismissed my worsening symptoms but told me that there's nothing more that can be done except surgery. I REFUSE the shunt because it doesn't do anything other than move fluid from one place to another and comes with guaranteed revision at some point.

    I have taken Lasix, Diamox, and Topiramate with no relief if any and trips to the bathroom incessantly along with nasty side effects. Now my days are spent sleeping or in bed because my headaches, vertigo, extreme fatigue, hearing changes, anxiety, depression, and other symptoms are a type of hell that no one understands unless they are enduring it. I am awake most nights because I can't sleep and there's no sunlight to hurt my eyes.

    I have papilledema and my vision is decreasing but I refuse to be a test subject for any doctor because most doctors do not know how to treat this condition. SO I have given my faith to GOD to assist me with enduring this. I pray incessantly at times and other times I cry to ease the hurt and confusion. My life will never be the same remission or not but I WILL NOT GIVE UP.

    I will pray for you to not only endure but to get better and live the best life that you can.

    Hang in there XOXO

  • Posted

    Oh boy! I am going on 28 years now with IHH, but I am in a lot better shape than you are cookie.

    Firstly, congrats - you have made it this far. Secondly, I managed to avoid a shunt, but realized that if it came down to keeping my vision I would accept a shunt and pray for the best result. Not everyone has complications/blockages and so on.

    I am lucky as my IHH was caused by a car accident and my pressure was never too high. You have been triple whammied, but you can only keep taking one day at a time.

    I am amazed that you are so worried about other people think. You have a rare neurological condition and you are living in a hell that most people cannot imagine. You should consider giving some close acquaintances a look into your life. I have a friend who never shares her worst health crissises with me and it really pees me off. That is what friends are for!

    I am a bit of a narcissist, so I got fed up with telling people who asked me how I was. So I stopped saying "fine" and I told them. LOL! Those kind of polite people do not ask too soon again. The one's who really care will.

    The Australian's were doing stents in blocked Transverse sinus veins long before the folks at John Hopkins in the USA and from what I have read, it appears that the higher a person's pressure, the more stents they may need to get the pressure under control. You may not need a shunt if they get the stenting right.

    Most importantly, you have to get a pain management regime, whether it is legal cannabis, or whatever it takes - that works! I am lucky, I have nominal head pain these days. I just know I cannot do certain things and that is that! I miss my gardening and the weeds grow wild. The house is a bit of a mess, but I am a full time carer to my mom and I make Alzheimer fidget items to try and make ends meet.

    I practice "Moriri Therapy". The Japanese call it "work" therapy. Theodore Roosevelt said it best, "Do what you can, with what you have, where you are".

    Last, but not least. Thoughts are energy - whether positive, or negative, they have POWER, so you need to take control of them. Play favourite music when you are in pain. Get some essential oils that you can smell to relax you. See if acupuncture helps with pain relief. Try some kind of relaxation that works for you. Get as healthy as you can. You know you need to limit salt, so need to focus on freshly squeezed fruit and veg, stuff like Kombucha and herbal teas. No soft drinks and fast foods.

    Just keep on taking it one day at a time. Start with one moment at a time. I am not saying I have not had the LP from hell. I have been there... and I cried. Now, they cannot do LP's on me, but if they were to try again, I would insist they used a numbing agent and did it under X-ray, or what you guys call Radiotherapy, or something.

    I had a LP leak that went on for weeks and even a blood patch (what we call an IV drip), did not help, so I ended up not being able to sit, or stand upright without being in agony for weeks. The doctor's assured me it was medically impossible. ROFL! I flew home lying back in the chair and after waiting lying down in the floor of the bathroom and I never went back to the big city hospital.

    I landed up with chronic fatigue from being over medicated with diuretic's and my mom who is a Nursing Sr figured it out. The doctor's accused me of being NEUROTIC! I used tissue salts and other natural supplements to get my health back. Now I read ALL the literature before any doctor gives me anything I take. They make mistakes, including neurologists. They are rushed for time, lazy and sometimes just too damn complacent in their own expertise.

    Having being on Diamox so long means that I have a lot of side effects. My bladder sensitivity is kaput, I do not get hungry or thirsty and God knows what else, but it is keeping my visual field intact. More or less. When it stops working... time to look at a shunt again. The last neurologist I saw wanted to do multiple lumbar punctures before even considering doing one. Yeah right!

    I can only tell you that my faith has kept me going through the worst of it. My family (only mom and younger brother), have actually never had much interest in my medical situation, but it is what it is. I refuse to give up and give anyone the satisfaction. God has a purpose for my life and until that is clear, I am not going anywhere. God bless!

  • Posted

    thank you so much for your kind words.

    I have sat here crying whilst reading them. I know how much sense they make but my head isn't processing them and too much negative is hitting me.

    I am England UK.

    I can't cope with so many mixed messages when one dr says you can't have painkillers because you'll get overuse headache, then another says there's no such thing as overuse headache. I do what I think the dr I fully trust would see as right and then I seem to come across as stupid and dumb.

    I just had my 3 month follow up appointment 11 months after my last admission. What is scary is the wait in between meetings with the dr to find out what happens next. A phone call next week will be make or break for any future treatment and I am dreading the call.

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