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Tired of feeling helpless

#1

I’m so tired of having no control over my own life. I had a relatively good week or two after ovulation, then my period started and i felt bad for a week. My period ended yesterday and out of nowhere my mav increased really badly and i spent the night vomiting, for no identifiable reason at all except the change in my hormones? I’m so fed up of being at the mercy of this hellish condition. I have no life whatsoever, i just survive. Everything within my power to control (skeep, food, routine, environment) hasn’t helped me even the tiniest bit. I’m sick of hearing about diet and lifestyle changes being sooooo important. What if they don’t help AT ALL? I’m so envious of anyone who can manage mav even just a little through diet and lifestyle. You are so lucky. If you have triggers you can’t avoid or manage, what then? I’m sick of the so called experts parroting on about lifestyle and duet as if it helps everyone with migraine. If it did, i’m sure there wouldn’t be thousands of people seeing headache specialists because they can’t find relief. Lifestyle and diet are easy options to manage and cost nothing, so i get how important they are but i’m tired of this attitude that it helps everyone with mav and you’ll definitely see improvement. Nope, sorry. Am I some difficult, doomed case? The NICE descriptions of chronic daily headache even say these patients are the “most difficult, labour intensive” to treat. Well thanks, that makes me feel like a nuisance. " The causes of many chronic daily headaches aren’t well-understood. True (primary) chronic daily headaches don’t have an identifiable underlying cause" well, that’s swell.

Do i have to live with this for 20 more years until menopause? Or will it last longer than that? Will anything ever bring any relief at all? I’m 30 years old for gods sake, life just passes me by while i’m trapoed in this cage that’s my body. I can’t do ANYTHING. I feel like just existing is a trigger. I’ve had this mess for 7 years and it’s only got worse over time. I’m sick of nobody knowing how to help me. I’m sick of being at the mercy of this shit. It’s not life, it’s existence, and i cannot face a life like this, it’s not worth it. I have to find relief and be able to live. I’m just so frustrated right now. So tired of the same old same old advice that does NOTHING.

I just needed to vent. (Feel free to move this post to the personal diaries section if it’s more suited for there, i wasn’t sure since i didn’t want to make a diary of symptoms and treatments, i just wanted to express feelings.)

#2

Do u take meds x

#3

Not at the moment. I tried 4 different preventatives but they didn’t help. I see a headache specialist next month and he is considering botox.

#4

Is yoirs more pain or vertigo

#5

Sometimes both, but i could learn to live with the headache. The dizziness is debilitating.

#6

I agree its hell on earth. Have ypu tried vrt

#7

Just wanted to say I empathise. I’ve been ill for 9 months and I already feel life is passing me by, so can imagine how exhausting and draining years of it are. I’m greatly limited in what I manage to do. It’s really rough. Hang in there, things will change, I love the Buddhist principle of impermanence.

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#8

:heart:

Reminds me of “This too shall pass”.

#9

Thank you xxx

The neuro-otologist i saw told me this was a bad phase of life but it would get better. I keep telling myself i will find treatment that works and get a life that’s liveable because the alternative is unthinkable. Thank you for your support, I hope you find relief soon too.

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#10

I have had at least a year of thinking exactly as you do, maybe even 2 years - helpless and angry. I’ve been to 4 different mental health specialists to deal with this condition. Even now that my MAV has mostly gone (80%), I’m left with a real bad anxiety that is difficult to control under very minor stress. I continue to see both a psychiatrist and a psychologist to manage. MAV creates an extremely sensitive nervous system, especially gone untreated for years, its not all in your head or your fault. Your body is doing exactly what it is designed to do and you need help from medical professionals and family/friends to get through it. I highly recommend finding some help to cope with this. And I highly recommend continuing to try medications, even repeating medications that failed you at extremely low doses.

7 Likes
#11

Thank you for the kind words @ander454 It’s good to know you have been where i am and managed to feel better. I hope you continue to do so. I’m currently just not well enough to attend any kind of therapy so that’s out of the question for now. Given the 12 months waiting lists anyway it’s not going to happen soon. I have a lot of support from my family, my mum is my rock and i couldn’t do without her. I’m not alone, thank god. I’ve only got 2 weeks to go until my appointment with the headache specialist and hopefully botox. I hope the specialist will be helpful, as he’s the only one anywhere remotely local andhave no alternative. I’ve heard he’s one of the best in his field but has left patients in tears because of a dismissive manner. I just hope he’ll be ok with meand i’ll get what i need to get my life liveable again.

#12

MissMigraine, I see you mention correlation with your cycle. Have you tried hormonal therapy? It can make some migraneures worse, some much better. And it can take some hormonal experimentation to find the right doses/combos.

#13

I haven’t tried it. I’ve been warned off it by people i know who tried it and it made them much worse. Having had that experience with the preventative meds (which made me so much worse it was unbearable) i’m really really wary and reluctant to try it. At least i could stop the meds and they were out of my system in a week or so. It can take several months for hormones to settle again after taking the pill or hormone therapy, and can’t imagine being stuck in that unbearable mav hell all that time if it made me feel worse. Before i developed mav i was reluctant to be put on the pill if not necessary because of side effects and not wanting to unbalance my hormones. I’m not comfortable with the risks. My doctors were only interested in knowing if my periods were regular or not and because they are, didn’t want to look into it. I we definitely discuss it with my headache specialist when i see him and see what he recommends.

#14

I would still look into it, some offer therapy through Skype, my psychiatrist does. They are not unused to dealing with patients that cannot leave the house, whether due to anxiety/depression, dizziness, or both. Anyways, good luck with your next appointment!

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#15

@MissMigraine, I am now at 55, I started getting bad chronic daily headaches when I was 30. I had been to so many doctors. Was in the military so moved every two years so had the advantage of getting new specialists but no one could ever do much. Then BOTOX came along, that is the only thing that made me feel somewhat better. Then I moved and can’t find a new neurologist that will do it. It is so debilitating and the vertigo has gotten worse in the past 3-4 years. I pray the BOTOX works for you like it did for me. I have tried so many different things. Good luck!im hoping one of these days I find a specialist where I moved to that will do it again.

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#16

I had Daily Chronic Headache for over 4 years with no identifiable cause( except my own theory…menopause) and the ONLY thing that has helped was Botox injections im having round 4 in 2 weeks time. Venlafaxine 75mg for the Vestibular symptoms. And unfortunately im still recovering from an awful spell that started 3 weeks ago. Its a long hard slog…
Jo

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#17

I am older than you and in menopause. When younger, the birth control pill triggered traditional migraine in me, so I never took it. But… I NEVER suffered from menstrual migraines. The pill was attempted on me because I was prone to ovarian cysts. Flash forward to perimenopause in my mid 40s. I wanted to try estrogen to see if it would help the VM, but I was afraid it would make me worse. My Dr said I would know within 10 days if it would worsen my migraine disease. Within 5 days, I had a traditional migraine, so I stopped it. It did not help nor worsen the VM though (dizziness). Then, last spring I had a VM relapse. I was also having hot flashes during this time. I did start the estrogen again at a low dose- just enough to stop the hot flashes. This time, it didn’t cause migraine, and did help the hot flashes. That in turn helped the VM to some degree… So I wonder if you talk to the Dr- if you would also know quickly whether it was a help for you or not. I only say this because I’ve read of women with menstrual migraine being helped by hormone therapy.

#18

@MissMigraine

I sympathize with this so much. Any level of VM is awful, but being bedridden with illness for years is one of the worst things that can happen to someone in life.
Sadly, this fact is seldom acknowledged by friends, family, doctors, or even fellow sufferers, and this leaves people like you and I to doubt our own coping skills, our diagnosis, and our plan of action.
Not only are we seriously ill, but we are seriously ill with one of the most dismissed illnesses there is: "migraine’ - a word which for the majority of doctors and general public invokes the image of a mere transitory painful headache.
Consequently, not only do we live in constant pain and discomfort, but feel we are seen (and sometimes see ourselves) as mentally feeble too. It is extremely unfair.

Moving forward with your recovery is therefore going to be a process whose difficulty will be massively under-recognized by your peers. It’s not fair but that’s just how it is. However, you DO deserve to be proud of that way you’re handling your recovery process, so long as you are always taking prudent steps towards improving your physical symptoms and psychological state (and from your posts, I can tell you are doing this). This, when you are as ill as you are, is all that is in your power to do.

Finally, I know medications have made you much sicker, and I too have gotten significantly worse since beginning medications, but I really believe that you need to start trialing a new medication ASAP. I honestly don’t think medication could make you any sicker, as by the sounds of it, you’re at rock bottom right now. I think getting back to medication trials will help you mentally too, as you’ll feel that you are once again taking steps towards recovery (even if just to continue ruling out drugs).

I hope this post didn’t come across as too pushy or arrogant, this message was as much to myself and others at the worse-end of MAV as it was to you. Feel free to DM me at any time, I feel I fully understand what you’re going through and feel many of the same frustrations you do.

Best wishes, D

7 Likes
#19

Thanks. I can’t afford to pay for it though and the nhs certainly won’t offer skype or phone sessions.

@d.powell thank you so much, your support is very much appreciated. It’s really helpful to know that people understand. I find that the medical professionals you turn to for help understand the least, which adds to the sense of helplessness because they are the only people who can help yet they don’t understand. When they don’t know what to do to help, it leaves you feeling doomed. I’m feeling super frustrated at the moment because i’ve spent 9 months taking no treatment at all because i’ve been moved from one waiting list to another. See a doctor, be told he can’t suggest anything else and thrn he puts you on another waiting list. Wait 3 more months, see a dr, be told the same, get put on another waiting list. So i’ve dobe nothing to help myself for 9 months because there’s nothing i can do. I’ve already done everything within my power and it doesn’t help. I hate having to rely on other people, especially doctors (who have let me down repeatedly in the past). But it’s out of my control and i need their “expertise”. I’ve only got 10 days left to wait until my appointment. I complained about it, saying the process of being on a conveyor belt of waiting lists had a dire effect on my wellbeing and the longer this condition is left, the more resistant it gets to meds. But i got a response telling me they appreciated it had been a long drawn out process but there’s nothing they could do and it was down to the triage doctors to decide which clinics i needed to visit, and they’d made decisions based on the info they had. You just end up feeling like nobody cares that you’re bedbound every day, they just recommend cbt (with a 12 month waiting list) and that’s it. The neurologists i saw didn’t really appreciate how disabling it is. They see me sat in the chair, talking, walking and don’t realise at all how i feel inside, because it’s invisible.

It’s so frustrating. And i know lots of others feel the same way, it’s not just me. I’ve gone beyond feeling depressed now, I’m just frustrated. At being helpless. All I can do is wait until my appointment and desperately hope the specialist will be a good one.

Thank you so much for your words, definitely not pushy at all. I feel like so few people understand - doctors, other people with MAV don’t even get it if they haven’t had it so bad. It feels like finding gold dust when you meet someone who gets it. And it’s horrible having to rely on people who don’t get it. My future, my life, is in the hands of doctors who don’t get it. That’s a miserable thought. I hwte being dependent on others, i want to solve my own problems because i trust myself. I hate having to trust others because it’s out of my control. I hate feeling like a guinea pig because there’s no better method except trial and error, and everything has the possibility of making you worse. At the back of my mind, is this fear that migraines need to be managed by avoiding triggers where possible, because there’s not much else can really be done. There are triggers you can’t avoid, so you need to manage diet, lifestyle etc so that you minimise triggers and don’t tip your threshold over the edge even if you encounter triggers you can’t avoid. That’s the attitude i see everywhere from doctors, experts, other mav patients. But what if diet and lifestyle management doesn’t help at all? What if my only triggers are ones i can’t avoid? What then? I can be given meds but they have a limited impact if i can’t avoid triggers… That’s at least what the experts imply. And it’s that attitude that depresses me and frustrates me. What am i supposed to do if i can’t control my condition? How are doctors supposed to help if they don’t have a clue?

I’m hoping the specialist i see will give me confidence and put these fears to rest. The neurologists i saw so far didn’t know what to suggest except cbt to learn to cope. And i took that as an implication of “we can’t do anything so you need to live with it”. They didn’t say that, but that’s all they could offer me and move me onto someone else. And i can’t live with this, not at this severity. I need to reduce it so its manageable but nobody bloody knows how to do that. It’s so depressing having nothing i can possibly do to give me any relief, no matter how small. It feels neverending.

#20

HI

I agree it is so depressing to feel helpless and have no consistency in life.

I don’t know where you live but my neuro told me you can request your GP refer you to whoever you want in the country especially if you have tried local avenues. Of course the kicker is you would need to be fit enough to get there. Anyway I wanted to say that Anne McGregor specialises in migraines and womens health/hormones and was recommended to me when I was having chronic migraine a few years back. (the chronic migraine abated as the MAV returned) An acquaintance who is a gynae consultant maintains that the Mirena coil (on its own , or) in conjunction with estrogen patches (with some trial and error) can really help with menstrual migraine but you need to find someone who would be willing to prescribe and work with you on it.